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What Causes Orthostatic Tremors In Legs And Sudden Inability To Focus?
Question: Dear Dr. Saghafi,
I am writing to you in regards a somewhat complicated diagnostic issue that has been progressing since early November ’14. I have been under neurological care here in Australia for the last few years, & whilst I am happy with this, this new issue has produced much confusion.
October ’14 I was diagnosed with Sepsis (Organism: Streptococcus Agalactiae. Entry site: Portacath). When I was well enough to leave the hospital & continue IV ABx (BenzylPenicillin) at home I developed the first onset of these new and progressive symptoms:
Sudden inability to focus (shaking laterally - not blurred vision), dysarthria, weak jaw, inability to chew, dysphagia, & facial droop (Right eye to mouth). It was noted that I had elevated platelets (750,000), & I was initially diagnosed with a TIA.
About one week later I experienced a similar correlation of symptoms, only this time I noticed a strange sensation in my mouth. I looked in the mirror and noticed tongue fasciculations. I filmed this for my neurologist. The episodes began to happen daily, associated with talking or increased activity. There is a clear fatigability correlation.
From November - early December the weakness & fasciculations descended to involve my limbs, notably my proximal muscles, & to a lesser effect my hands. At it’s worst I physically cannot reach my own head & struggle to dress myself. I have also begun to experience weakness & severe fasciculations of my girdle muscles.
To date, since the onset of these symptoms I have lost around 30lbs. I believe due to the inability to eat successfully, more so than atrophy.
Prior to these issues I did have an essential tremor, but this has progressed and changed in presentation. Some mornings I will awaken with a mild tremor throughout both limbs. Holding any sustained position for even a brief time period will induce a tremor (legs, arms, jaw), and I have developed an orthostatic tremor in my legs. This is not visual I am told, but it can be felt by myself and others.
Lab tests have been non conclusive. Paraneoplastic panel, muscle AchR Abs, CK, b12, red cell Folate, Thyroid panel, all electrolytes – norm. CBC – elevated platelets (510,000), MUSK Abs – awaiting results. Brain & C-spine w/contrast MRI norm. LP – awaiting results. NCS/Complex EMG – non conclusive. I have not recieved official results. My neurologist was unable to make a diagnosis at the time of testing. I had one abnormal muscle, with a "zing" sound, but that is all I'm aware of. We ruled out Isaacs/neuromyotonia during this appointment as the fascics weren't present.
*Please see a link to a clip showing an example of my tongue fascics: https://www.youtube.com/watch?v=SsPS8Y9_Cos
Any advice you can offer would be sincerely appreciated, including any potential diagnostic areas to explore.
With thanks,
XXXX
I am writing to you in regards a somewhat complicated diagnostic issue that has been progressing since early November ’14. I have been under neurological care here in Australia for the last few years, & whilst I am happy with this, this new issue has produced much confusion.
October ’14 I was diagnosed with Sepsis (Organism: Streptococcus Agalactiae. Entry site: Portacath). When I was well enough to leave the hospital & continue IV ABx (BenzylPenicillin) at home I developed the first onset of these new and progressive symptoms:
Sudden inability to focus (shaking laterally - not blurred vision), dysarthria, weak jaw, inability to chew, dysphagia, & facial droop (Right eye to mouth). It was noted that I had elevated platelets (750,000), & I was initially diagnosed with a TIA.
About one week later I experienced a similar correlation of symptoms, only this time I noticed a strange sensation in my mouth. I looked in the mirror and noticed tongue fasciculations. I filmed this for my neurologist. The episodes began to happen daily, associated with talking or increased activity. There is a clear fatigability correlation.
From November - early December the weakness & fasciculations descended to involve my limbs, notably my proximal muscles, & to a lesser effect my hands. At it’s worst I physically cannot reach my own head & struggle to dress myself. I have also begun to experience weakness & severe fasciculations of my girdle muscles.
To date, since the onset of these symptoms I have lost around 30lbs. I believe due to the inability to eat successfully, more so than atrophy.
Prior to these issues I did have an essential tremor, but this has progressed and changed in presentation. Some mornings I will awaken with a mild tremor throughout both limbs. Holding any sustained position for even a brief time period will induce a tremor (legs, arms, jaw), and I have developed an orthostatic tremor in my legs. This is not visual I am told, but it can be felt by myself and others.
Lab tests have been non conclusive. Paraneoplastic panel, muscle AchR Abs, CK, b12, red cell Folate, Thyroid panel, all electrolytes – norm. CBC – elevated platelets (510,000), MUSK Abs – awaiting results. Brain & C-spine w/contrast MRI norm. LP – awaiting results. NCS/Complex EMG – non conclusive. I have not recieved official results. My neurologist was unable to make a diagnosis at the time of testing. I had one abnormal muscle, with a "zing" sound, but that is all I'm aware of. We ruled out Isaacs/neuromyotonia during this appointment as the fascics weren't present.
*Please see a link to a clip showing an example of my tongue fascics: https://www.youtube.com/watch?v=SsPS8Y9_Cos
Any advice you can offer would be sincerely appreciated, including any potential diagnostic areas to explore.
With thanks,
XXXX
Brief Answer:
Diagnostic Dilemma
Detailed Answer:
Good evening Ms. XXXXXXX As YOU KNOW, my name is Dr. Dariush Saghafi and I'm an adult neurologist from XXXXXXX Ohio, USA. I am honored that you are writing to me on this network and strictly out of curiosity would be interested in knowing how you came about my name to write your question. You may ignore answering that question if you choose. I've been studying your symptoms and your presentation for a bit now since I saw it and would like to make some preliminary comments with the caveat that I may have some additional time to think on the topic to see what may come to me regarding your condition and what your doctors have been able to come up with at this point. My daughter would like me to take her to a movie in the next hour so that's the only reason I'm a bit short on time right now! HA!
As an aside, I too compete in sports, still, not at a world class level by any means...but continue to train at competitive levels in wrestling (U.S. collegiate style as well as freestyle and Greco Roman). I'm also an assistant coach at a local University. My training schedule is approximately 4 hrs. per day and has been that way for the last 10 years with competitions several times a year. I tell you this for the express purpose of letting you know that I come from that sort of background and therefore, I believe I have some understanding of yours. Is it correct that your sport is tennis? That's only a guess on my part since I saw a writeup with your name and perhaps a picture in the Frankston City newspaper in 2009.
At any rate, could you tell me if my guess is incorrect what sport you did train at in case it was not tennis. I'd like to know if you ever suffered any severe injuries during training such as head trauma or the like. Could you also tell me your current profession or studies since you're currently 22 years old. Your case presentation is very impressive for a lay person and I was curious to know how much medical background you might have.....
Are there any family members who suffer from any genetic or familial illnesses even if not related to what you might have? Any neurological diseases in your family such as stroke, Parkinson's, Multiple Sclerosis, Amyotrophic Lateral Sclerosis? Are you a smoker, alcohol user to any extent (I know you're an Aussie so that counts for something....gauge by my yardstick....I don't drink alcohol at all! LOL). Have you now or in the past used any illicit substances to which you may have had adverse reactions...please take no offense to these questions but it is my routine to try and get as much information as possible when cases have this many layers and moving parts to them.
When you write "Sudden inability to focus (shaking laterally - not blurred vision)", in particular "shaking laterally" are you referring to a side to side motion of both of your eyes? We refer to that as nystagmus. If this is true can you tell me more about it and do you have any video of this phenomenon. Can you tell me if that condition gets better or worse with the eyes looking in any particular direction such as up, down, right or left sides, or upwards right/left, or downwards right/left? (Is the nystagmus or intermittent). What seems to bring it on if it's not constant. Did it start by chance after the start of any particular medication on your list?
Do you have any files, laboratory data, MRI reports of the brain or spinal cord, EEG reports, or EMG/NCV reports that you can possibly upload to this network as .pdf files or digital pictures?
Have you had a full autonomic function battery of tests or just the tilt table test? Have you had paced breathing exercise testing done and sweat testing done both in the hot box as well as by QSART stimulation?
I will make a comment about BFS then, I have a question.
COMMENT: When you make mention of the fact that the diagnosis of BFS has been essentially "ruled out" due to the fact that its widespread progression is seemingly not very benign anymore I need to bring the following to your attention. The term BENIGN isn't attached to the syndrome based upon severity of symptoms or whether it is convenient/inconvenient/tolerable or any such subjective type of condition with respect to the patient. The term BENIGN refers to the fact that the fasciculations of the muscles (as widespread or focal as they may be) do not exist or travel in the company of XXXXXXX muscle weakness or non-volitional weight loss. Therefore, if BFS was forwarded as a possible diagnosis I would personally still like to keep it on the table as a way of at least explaining the fasciculatory activity for the time being.
QUESTION #1: Have you had an EMG/NCV done in any of the muscles particularly affected by the fasciculations? If not, why not?
QUESTION #2: You say that you once had an ESSENTIAL tremor. Would you please explain the symptoms which were present at the outset, how it was treated (was treatment successful?), and in what way did it change? You mention an imperceptible orthostatic tremor (to a distant observer) but which can be felt by yourself and others...do you mean they can touch your legs and feel the tremors?
I may have some more questions that I'd like answered before I attempt at putting the whole enchilada together for you...I hope you don't mind....I would just like to know we are all on the same page with definitions, vernacular, and history.
Write back soon.
Cheers!
Diagnostic Dilemma
Detailed Answer:
Good evening Ms. XXXXXXX As YOU KNOW, my name is Dr. Dariush Saghafi and I'm an adult neurologist from XXXXXXX Ohio, USA. I am honored that you are writing to me on this network and strictly out of curiosity would be interested in knowing how you came about my name to write your question. You may ignore answering that question if you choose. I've been studying your symptoms and your presentation for a bit now since I saw it and would like to make some preliminary comments with the caveat that I may have some additional time to think on the topic to see what may come to me regarding your condition and what your doctors have been able to come up with at this point. My daughter would like me to take her to a movie in the next hour so that's the only reason I'm a bit short on time right now! HA!
As an aside, I too compete in sports, still, not at a world class level by any means...but continue to train at competitive levels in wrestling (U.S. collegiate style as well as freestyle and Greco Roman). I'm also an assistant coach at a local University. My training schedule is approximately 4 hrs. per day and has been that way for the last 10 years with competitions several times a year. I tell you this for the express purpose of letting you know that I come from that sort of background and therefore, I believe I have some understanding of yours. Is it correct that your sport is tennis? That's only a guess on my part since I saw a writeup with your name and perhaps a picture in the Frankston City newspaper in 2009.
At any rate, could you tell me if my guess is incorrect what sport you did train at in case it was not tennis. I'd like to know if you ever suffered any severe injuries during training such as head trauma or the like. Could you also tell me your current profession or studies since you're currently 22 years old. Your case presentation is very impressive for a lay person and I was curious to know how much medical background you might have.....
Are there any family members who suffer from any genetic or familial illnesses even if not related to what you might have? Any neurological diseases in your family such as stroke, Parkinson's, Multiple Sclerosis, Amyotrophic Lateral Sclerosis? Are you a smoker, alcohol user to any extent (I know you're an Aussie so that counts for something....gauge by my yardstick....I don't drink alcohol at all! LOL). Have you now or in the past used any illicit substances to which you may have had adverse reactions...please take no offense to these questions but it is my routine to try and get as much information as possible when cases have this many layers and moving parts to them.
When you write "Sudden inability to focus (shaking laterally - not blurred vision)", in particular "shaking laterally" are you referring to a side to side motion of both of your eyes? We refer to that as nystagmus. If this is true can you tell me more about it and do you have any video of this phenomenon. Can you tell me if that condition gets better or worse with the eyes looking in any particular direction such as up, down, right or left sides, or upwards right/left, or downwards right/left? (Is the nystagmus or intermittent). What seems to bring it on if it's not constant. Did it start by chance after the start of any particular medication on your list?
Do you have any files, laboratory data, MRI reports of the brain or spinal cord, EEG reports, or EMG/NCV reports that you can possibly upload to this network as .pdf files or digital pictures?
Have you had a full autonomic function battery of tests or just the tilt table test? Have you had paced breathing exercise testing done and sweat testing done both in the hot box as well as by QSART stimulation?
I will make a comment about BFS then, I have a question.
COMMENT: When you make mention of the fact that the diagnosis of BFS has been essentially "ruled out" due to the fact that its widespread progression is seemingly not very benign anymore I need to bring the following to your attention. The term BENIGN isn't attached to the syndrome based upon severity of symptoms or whether it is convenient/inconvenient/tolerable or any such subjective type of condition with respect to the patient. The term BENIGN refers to the fact that the fasciculations of the muscles (as widespread or focal as they may be) do not exist or travel in the company of XXXXXXX muscle weakness or non-volitional weight loss. Therefore, if BFS was forwarded as a possible diagnosis I would personally still like to keep it on the table as a way of at least explaining the fasciculatory activity for the time being.
QUESTION #1: Have you had an EMG/NCV done in any of the muscles particularly affected by the fasciculations? If not, why not?
QUESTION #2: You say that you once had an ESSENTIAL tremor. Would you please explain the symptoms which were present at the outset, how it was treated (was treatment successful?), and in what way did it change? You mention an imperceptible orthostatic tremor (to a distant observer) but which can be felt by yourself and others...do you mean they can touch your legs and feel the tremors?
I may have some more questions that I'd like answered before I attempt at putting the whole enchilada together for you...I hope you don't mind....I would just like to know we are all on the same page with definitions, vernacular, and history.
Write back soon.
Cheers!
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Good evening Dr. Saghafi,
Thank you for responding to my question. I do understand that it’s by no means simple. I hope you enjoy your night out and movie with your daughter! Those are always special.
Ah, XXXXXXX I have a friend who lives there. Small world. I’ve heard it’s lovely. As for curiosity, that’s fine. I would probably be wondering too. You have previously answered one of my free questions on HT. It was actually when we thought I had a TIA. I scrolled through a couple of your answers and you immediately reminded me of my own neurologist here in Melbourne (All good reasons!). Funnily enough, he’s American! You appear to have an extremely broad knowledge base, whilst being approachable and good humored. Just the kind of person and physician I respond well to. I sent you a watered down version of my first message via HT earlier in the month, but I’m unsure whether it actually went through or not. I fell upon this network by chance sometime ago, so I decided to pull it up again and type your name to see if you were doing concierge work here too and turns out you are! (With no 2000 character limit! ha) I decided to take my chances again & here we are ☺
Wow, that’s quite the schedule you have. All of that on top of medicine & family life. I’m impressed & inspired actually. It shows you by no means have to choose.
My sport is/was Roller Figure Skating. I tend to say I’m retired now, just coach my youngsters. I actually can’t believe you found that photo. Ha. Could they have chosen something post puppy-fat days? I completely forgot about that. That photo was outdated even for then. Good ole Google! I’ll attach a photo of team AU with part of team USA in Auckland, purely because you went to the effort of a Google search.
In regards to serious injuries; I recall two posterior head knocks coming down from badly executed jumps. No loss of consciousness, vomiting or visual disturbance. All other injuries have been musculoskeletal.
Area of study: Nursing, top of class & craving more. I intend to go to med-school. If I can actually get my body on track enough so that I can attend classes more regularly, that would help ;-)
(Spending a lot of time in a neuro ward tends to reinforce terminology pretty quickly too.)
Family Hx is pretty sparse, but I’ll give you my best.
Paternal Grandmother – Deceased. Early onset Alzheimer’s.
Paternal Grandfather – Deceased – Suicide (Cause unknown, 40 Yrs)
Paternal Uncle – Deceased – Stab wounds (drug addiction, ect)
Paternal Aunty 1 - Nil complaints bar Gestational diabetes.
Paternal Aunty 2 – IBS
Father – Nil complaints.
Maternal Grandfather – Deceased – Dilated cardiomyopathy, 2x myocardial infarcts
Maternal Grandmother – Hypertension.
Maternal Uncle – Hypertension, Bradycardia (occasional), thickened myocardium.
Maternal Aunty – Fibromyalgia
Mother – Migraine, Adult onset nystagmus (no known cause), 2mm lipoma in brain – not along ocular tracts.
No genetic or familial diseases that I’m aware of. Admittedly it’s difficult to uncover information about Dad’s side of the family. There’s just no one around who knows. I do question if there’s any pathological link between dad’s father and dad’s brothers life paths and passing’s. But those are questions I will never get answers to.
As for me, apart from my medical Hx, I’m as boring as they come, especially for an Aussie!
Never smoked, may have had 3 drinks total in my lifetime, & wouldn’t even know where to get illicit substances ha!
It definitely isn’t nystagmus. I’ve had my eyes observed by a physician whilst it’s been occurring and there’s been no movement. I believe they termed it oscillopsia? at the time. It’s definitely an illusion of the item I’m intending to focus on moving laterally at a fast pace. I first experienced this well before I ever tried Pyridostigmine, and generally in the PMs. Like the rest, this increased in frequency and intensity post sepsis. The other medications have been very long term, so really struggling to make any links.
I’ve had an Autonomic reflex Screen; actually I’ve had 3 over the years. Each has worsened. It’s a complex screening which covers everything bar the hot box. I’m not even sure that’s conducted anywhere in Australia currently. I believe my neurologist is the only one conducting these tests in the country. (QSART was abnormal, HRVDB – abnormal, Tilt abnormal)
Understand completely and agree with the definition of BFS. Our I guess, hard time with committing to that diagnosis is the degree of weakness I’m experiencing.
I should add, I did experience weakness prior to the sepsis, to such a degree that we did question MG at that point. Via phone consultation we decided to order the antibodies when we next met as after a trial on Mestinon I was improving in strength and function remarkably, but not in regards to autonomic symptoms. I ended up getting admitted with sepsis, so the ordering of the antibodies was delayed, weakness progressed but we now have the added symptom of fasciculations.
I can definitely relate to how this is a diagnostic dilemma. It’s hard to tell whether this was always one disease process that progressed since sepsis, or if we are truly discussing two distinct entities.
Answer to Q1) We performed the EMG in the RA muscles, however I wasn’t experiencing any fasciculations at the time. Normal result. However no NCS was done on the abdomen. He tested primarily distal muscles to obtain a baseline it seems. I got the impression he will be running another study on me. He didn’t test my tongue. As for why, I’m not sure. Maybe he felt he had put me through enough in two hours, two days prior to xmas. I believe he still wants to run the SFEMG.
Answer to Q2) 18months ago I began to experience an obvious tremor of both arms and hands. It was quite inconvenient and troublesome when trying to write. Initially it was worse when my autonomic symptoms were worse. So I questioned an abnormal sympathetic innervation. With my Neuro’s blessing we increased the clonidine from 25mcg BD – 50mcg BD to calm that response and there was temporary improvement. Propranolol was out of the question due to worsening of Bradycardia, and at the time, waiting for a review regarding a pacemaker. It was also known to make me very weak. I tried it previously when I was skating and could barely move my legs. I felt as though I was in mud. Another reason we have queried MG due to that known drug/condition interaction. As for how it’s changed, its similar in presentation, only now it’s present more often including occasionally whilst at rest and upon wakening.
& yes, the orthostatic tremor in the legs cannot be seen, but can be felt by myself and others if they were to touch my legs or stand close enough next to me.
I’ll see what I can gather in terms of reports. I don’t have copies of the NCS/EMG, or the LP performed on Tuesday 13/01. However I do know my CSF output pressure was normal this time (14.5cm2 h2o.) I’ve also never had an EEG.
I’ve linked additional clips of various fascics into the description box of the first video if you’re interested. (link in original message)
Feel free to ask any more questions. & I’ll dig up what I can re laboratory and test data!
Thank you for your time, and apologies for the length!!
Kind regards,
XXXX
Thank you for responding to my question. I do understand that it’s by no means simple. I hope you enjoy your night out and movie with your daughter! Those are always special.
Ah, XXXXXXX I have a friend who lives there. Small world. I’ve heard it’s lovely. As for curiosity, that’s fine. I would probably be wondering too. You have previously answered one of my free questions on HT. It was actually when we thought I had a TIA. I scrolled through a couple of your answers and you immediately reminded me of my own neurologist here in Melbourne (All good reasons!). Funnily enough, he’s American! You appear to have an extremely broad knowledge base, whilst being approachable and good humored. Just the kind of person and physician I respond well to. I sent you a watered down version of my first message via HT earlier in the month, but I’m unsure whether it actually went through or not. I fell upon this network by chance sometime ago, so I decided to pull it up again and type your name to see if you were doing concierge work here too and turns out you are! (With no 2000 character limit! ha) I decided to take my chances again & here we are ☺
Wow, that’s quite the schedule you have. All of that on top of medicine & family life. I’m impressed & inspired actually. It shows you by no means have to choose.
My sport is/was Roller Figure Skating. I tend to say I’m retired now, just coach my youngsters. I actually can’t believe you found that photo. Ha. Could they have chosen something post puppy-fat days? I completely forgot about that. That photo was outdated even for then. Good ole Google! I’ll attach a photo of team AU with part of team USA in Auckland, purely because you went to the effort of a Google search.
In regards to serious injuries; I recall two posterior head knocks coming down from badly executed jumps. No loss of consciousness, vomiting or visual disturbance. All other injuries have been musculoskeletal.
Area of study: Nursing, top of class & craving more. I intend to go to med-school. If I can actually get my body on track enough so that I can attend classes more regularly, that would help ;-)
(Spending a lot of time in a neuro ward tends to reinforce terminology pretty quickly too.)
Family Hx is pretty sparse, but I’ll give you my best.
Paternal Grandmother – Deceased. Early onset Alzheimer’s.
Paternal Grandfather – Deceased – Suicide (Cause unknown, 40 Yrs)
Paternal Uncle – Deceased – Stab wounds (drug addiction, ect)
Paternal Aunty 1 - Nil complaints bar Gestational diabetes.
Paternal Aunty 2 – IBS
Father – Nil complaints.
Maternal Grandfather – Deceased – Dilated cardiomyopathy, 2x myocardial infarcts
Maternal Grandmother – Hypertension.
Maternal Uncle – Hypertension, Bradycardia (occasional), thickened myocardium.
Maternal Aunty – Fibromyalgia
Mother – Migraine, Adult onset nystagmus (no known cause), 2mm lipoma in brain – not along ocular tracts.
No genetic or familial diseases that I’m aware of. Admittedly it’s difficult to uncover information about Dad’s side of the family. There’s just no one around who knows. I do question if there’s any pathological link between dad’s father and dad’s brothers life paths and passing’s. But those are questions I will never get answers to.
As for me, apart from my medical Hx, I’m as boring as they come, especially for an Aussie!
Never smoked, may have had 3 drinks total in my lifetime, & wouldn’t even know where to get illicit substances ha!
It definitely isn’t nystagmus. I’ve had my eyes observed by a physician whilst it’s been occurring and there’s been no movement. I believe they termed it oscillopsia? at the time. It’s definitely an illusion of the item I’m intending to focus on moving laterally at a fast pace. I first experienced this well before I ever tried Pyridostigmine, and generally in the PMs. Like the rest, this increased in frequency and intensity post sepsis. The other medications have been very long term, so really struggling to make any links.
I’ve had an Autonomic reflex Screen; actually I’ve had 3 over the years. Each has worsened. It’s a complex screening which covers everything bar the hot box. I’m not even sure that’s conducted anywhere in Australia currently. I believe my neurologist is the only one conducting these tests in the country. (QSART was abnormal, HRVDB – abnormal, Tilt abnormal)
Understand completely and agree with the definition of BFS. Our I guess, hard time with committing to that diagnosis is the degree of weakness I’m experiencing.
I should add, I did experience weakness prior to the sepsis, to such a degree that we did question MG at that point. Via phone consultation we decided to order the antibodies when we next met as after a trial on Mestinon I was improving in strength and function remarkably, but not in regards to autonomic symptoms. I ended up getting admitted with sepsis, so the ordering of the antibodies was delayed, weakness progressed but we now have the added symptom of fasciculations.
I can definitely relate to how this is a diagnostic dilemma. It’s hard to tell whether this was always one disease process that progressed since sepsis, or if we are truly discussing two distinct entities.
Answer to Q1) We performed the EMG in the RA muscles, however I wasn’t experiencing any fasciculations at the time. Normal result. However no NCS was done on the abdomen. He tested primarily distal muscles to obtain a baseline it seems. I got the impression he will be running another study on me. He didn’t test my tongue. As for why, I’m not sure. Maybe he felt he had put me through enough in two hours, two days prior to xmas. I believe he still wants to run the SFEMG.
Answer to Q2) 18months ago I began to experience an obvious tremor of both arms and hands. It was quite inconvenient and troublesome when trying to write. Initially it was worse when my autonomic symptoms were worse. So I questioned an abnormal sympathetic innervation. With my Neuro’s blessing we increased the clonidine from 25mcg BD – 50mcg BD to calm that response and there was temporary improvement. Propranolol was out of the question due to worsening of Bradycardia, and at the time, waiting for a review regarding a pacemaker. It was also known to make me very weak. I tried it previously when I was skating and could barely move my legs. I felt as though I was in mud. Another reason we have queried MG due to that known drug/condition interaction. As for how it’s changed, its similar in presentation, only now it’s present more often including occasionally whilst at rest and upon wakening.
& yes, the orthostatic tremor in the legs cannot be seen, but can be felt by myself and others if they were to touch my legs or stand close enough next to me.
I’ll see what I can gather in terms of reports. I don’t have copies of the NCS/EMG, or the LP performed on Tuesday 13/01. However I do know my CSF output pressure was normal this time (14.5cm2 h2o.) I’ve also never had an EEG.
I’ve linked additional clips of various fascics into the description box of the first video if you’re interested. (link in original message)
Feel free to ask any more questions. & I’ll dig up what I can re laboratory and test data!
Thank you for your time, and apologies for the length!!
Kind regards,
XXXX
Brief Answer: XXXXXXX is lovely and becoming even more so
Detailed Answer:
You have a friend from here? Wow! Through your sport? Do they attend college here? That's awesome....and as I read more about you and look at your picture on the team...I think you're likely an amazing individual as well....wouldn't use the word "boring" as a descriptor for you or your situation at all! So now that you've got an incentive to visit XXXXXXX you must plan a trip some day. Let us get a few more things built up though first...we are experiencing a renaissance of sorts (finally---- well, except in our sports teams who continue to be good 'ole status quo! LOL). But the rest of the city is undergoing incredible transformations throughout from downtown and even the previously very bad and even dangerous neighborhoods to the burbs!
And your neurologist is XXXXXXX as well....I looked at his name on the report but am sorry to say I don't recognize it...do you know if he attends the Academy of Neurology meetings at all? Maybe not frequently if he now lives in Australia....have always be enamored with Down Under...don't know...the Crocodile Dundee mystique I guess. I do not recall getting any questions from you on HT...I would've remembered....the system is very odd as to how it allows or sends things through sometimes. I'm so glad you just took a shot at looking me up here because as it turns out this is the only other service (for the moment) that I am affiliated with outside of HT.
You mentioned a video clip of some sort....but I'm not seeing that....if I give you my email....can you attach it and shoot it to me that way....you were talking about the fasciculatory activity of the tongue....My email is YYYY@YYYY
A nursing student by trade....that explains your description of your case...with medical aspirations...IMPRESSIVE...I think you're a very smart and dedicated lady....getting to know all about what's going on with your body shows interest and stamina...perhaps, you'll be the cutting edge leader to finally figure out dysautonomia!
I agree that while there are significant things in your family's medical history (significant for each individual that is) I can't see what relationship they could have with your situation unless you want to hypothesize something going on as a link of some kind between IBS and your mom's adult onset nystagmus of idiopathic origin. Usually, that would be considered MS until proven otherwise...but I take it she hasn't progressed and was fully worked up? So aside for those 2 items nothing else strikes me as being related to your situation.
You mentioned 2 bad blows to the head. Now, for there to have been sufficient enough force to cause damage...it's not necessarily true that you would've had to lose consciousness....just "seeing stars" and being dazed for a few moments would be enough. We used to believe that unless a person was literally knocked unconscious that the brain can not have been jostled around enough to cause anything but not true. I've got another patient right now from the UK who had a head blow (admittedly much more serious than yours playing cricket- he ran into a deep ditch and struck his head causing a whiplash type of injury) and then, several months later developed widespread fasciculations.
What is the relationship between your fasciculatory activity and your head trauma?
I think an EEG is worthwhile getting in this case for that reason....post traumatic head injury fasciculations are a well documented entity and can occur weeks to months after injuries...they can be as mild as jarring one's head on an open closet door and can represent loss of inhibitory motor control mechanisms. In your case the posterior head bang could've as well caused some damage within the skull table to the frontal poles of the brain in a contracoup form of injury if you're familiar with the term coup-contracoup. You didn't mention any type of architectural abnormalities of significance but just a thought based on the 2 injuries....which must've hurt A LOT! I know....been there...done that....absolutely head when the back of the head gets it....you think you can control that type of injury but it is probably the one least under your control and you know it's coming! LOL...
I still think BFS is a possibility...the weakness doesn't appear to have a component of relationship to the fasciculations because if it did then, we'd be looking at something on the order of motor neuron disease (ALS) which in you should be nearly impossible given your gender, the way the fasics have progressed, the fact that you don't have weakness and atrophy....if you were improving on the Mestinon...remind me why you stopped that?
I don't see that a MUSK was obtained in the evaluation of possible MG. Was that because of the sepsis issue that intervened and caused other testing to be put on the back burner. Yes, oscillopsia is different from nystagmus and probably more consistent with with something like MG than anything else under consideration.
I definitely think an EEG is worth getting though the chances are low that surface recordings will pick up anything if you're really not manifesting any sort of mental status change....but I would try it anyways....up to our NEUROLOGY COLLEAGUE though if he chooses.
As far the tremor is concerned...if clonidine has done the trick then, great....was any consideration given to primidone as a substitute to propranolol. Also, was it an essential type of tremor (worse on action/intention vs. rest) or was it more of the orthostatic kinds which would come with postural changes. And as far as that is concerned.....how about the conservative measure of simply increasing salt intake to take care of the blood pressure problems as opposed of having to do constant infusions. I am aware of the more recent controversies surrounding high level salt intake these days relative to kidney function.....of course, people have always scoffed had high salt intake due to its relationship with hypertension....but in your case you've got signs of dysautonomia with loss of orthostatic controls. My problem with fluid bolus infusions is they are extremely temporary....as long as it takes the kidneys to get rid of the extra fluid load..is as long as the benefit of volume improving pressure considerations would last....which in my opinion would be hours to a day or so after the last infusion in my opinion....I'm assuming your kidneys are as robust as you are!
Ok....those are my additional thoughts for right now....we'll be in contact.
KEEP YOUR ACTIVITY LEVELS UP....you want the stimulation of the physical side of the equation to stay high..as much as possible....I realize you're not feeling centered right now.....just choose some activity...even if not skating....how about some light machine work with the legs for example? Or is the fatigue factor overwhelming? Light jogs with some intermittent sprints? How about suicide runs on a soccer field for example....are you familiar with that term we like to use? Sprints of 5 yards then, 10, then, 15, then, 20....whatever you can tolerate reasonably well...start slow and work up....
The point is you need to keep stimulating that autonomic system with normal sorts of signals otherwise, it will "forget" things....if that makes sense....or it will tend to reset itself to another level of maximum effort and make it difficult for you to break through it making you less active as time goes on....Now, I'm talking like a wrestling coach.....I'll tell you the story on a wrestling friend of mine who we recently lost in November with autonomic dysfunction....NOT LIKE YOUR SITUATION....so completely different...but his keeping up physical activity and fitness even in the last weeks I believe helped him immensely throughout the course of things as he was navigating the rough part of his course.
Again, his case and yours I believe are entirely separate entities...but I place a huge premium when it comes to conservative and holistic types of measures on physical activity especially in someone who is trained at a high or elite level such as yourself.
Be well....write back soon and send an email....BTW, Parma Neurology has a facebook presence if you'd care to peruse the page....it's not much....just started it a little bit ago...but I'd be honored if you took a peak! HA!
https://www.facebook.com/parmaneurology
Detailed Answer:
You have a friend from here? Wow! Through your sport? Do they attend college here? That's awesome....and as I read more about you and look at your picture on the team...I think you're likely an amazing individual as well....wouldn't use the word "boring" as a descriptor for you or your situation at all! So now that you've got an incentive to visit XXXXXXX you must plan a trip some day. Let us get a few more things built up though first...we are experiencing a renaissance of sorts (finally---- well, except in our sports teams who continue to be good 'ole status quo! LOL). But the rest of the city is undergoing incredible transformations throughout from downtown and even the previously very bad and even dangerous neighborhoods to the burbs!
And your neurologist is XXXXXXX as well....I looked at his name on the report but am sorry to say I don't recognize it...do you know if he attends the Academy of Neurology meetings at all? Maybe not frequently if he now lives in Australia....have always be enamored with Down Under...don't know...the Crocodile Dundee mystique I guess. I do not recall getting any questions from you on HT...I would've remembered....the system is very odd as to how it allows or sends things through sometimes. I'm so glad you just took a shot at looking me up here because as it turns out this is the only other service (for the moment) that I am affiliated with outside of HT.
You mentioned a video clip of some sort....but I'm not seeing that....if I give you my email....can you attach it and shoot it to me that way....you were talking about the fasciculatory activity of the tongue....My email is YYYY@YYYY
A nursing student by trade....that explains your description of your case...with medical aspirations...IMPRESSIVE...I think you're a very smart and dedicated lady....getting to know all about what's going on with your body shows interest and stamina...perhaps, you'll be the cutting edge leader to finally figure out dysautonomia!
I agree that while there are significant things in your family's medical history (significant for each individual that is) I can't see what relationship they could have with your situation unless you want to hypothesize something going on as a link of some kind between IBS and your mom's adult onset nystagmus of idiopathic origin. Usually, that would be considered MS until proven otherwise...but I take it she hasn't progressed and was fully worked up? So aside for those 2 items nothing else strikes me as being related to your situation.
You mentioned 2 bad blows to the head. Now, for there to have been sufficient enough force to cause damage...it's not necessarily true that you would've had to lose consciousness....just "seeing stars" and being dazed for a few moments would be enough. We used to believe that unless a person was literally knocked unconscious that the brain can not have been jostled around enough to cause anything but not true. I've got another patient right now from the UK who had a head blow (admittedly much more serious than yours playing cricket- he ran into a deep ditch and struck his head causing a whiplash type of injury) and then, several months later developed widespread fasciculations.
What is the relationship between your fasciculatory activity and your head trauma?
I think an EEG is worthwhile getting in this case for that reason....post traumatic head injury fasciculations are a well documented entity and can occur weeks to months after injuries...they can be as mild as jarring one's head on an open closet door and can represent loss of inhibitory motor control mechanisms. In your case the posterior head bang could've as well caused some damage within the skull table to the frontal poles of the brain in a contracoup form of injury if you're familiar with the term coup-contracoup. You didn't mention any type of architectural abnormalities of significance but just a thought based on the 2 injuries....which must've hurt A LOT! I know....been there...done that....absolutely head when the back of the head gets it....you think you can control that type of injury but it is probably the one least under your control and you know it's coming! LOL...
I still think BFS is a possibility...the weakness doesn't appear to have a component of relationship to the fasciculations because if it did then, we'd be looking at something on the order of motor neuron disease (ALS) which in you should be nearly impossible given your gender, the way the fasics have progressed, the fact that you don't have weakness and atrophy....if you were improving on the Mestinon...remind me why you stopped that?
I don't see that a MUSK was obtained in the evaluation of possible MG. Was that because of the sepsis issue that intervened and caused other testing to be put on the back burner. Yes, oscillopsia is different from nystagmus and probably more consistent with with something like MG than anything else under consideration.
I definitely think an EEG is worth getting though the chances are low that surface recordings will pick up anything if you're really not manifesting any sort of mental status change....but I would try it anyways....up to our NEUROLOGY COLLEAGUE though if he chooses.
As far the tremor is concerned...if clonidine has done the trick then, great....was any consideration given to primidone as a substitute to propranolol. Also, was it an essential type of tremor (worse on action/intention vs. rest) or was it more of the orthostatic kinds which would come with postural changes. And as far as that is concerned.....how about the conservative measure of simply increasing salt intake to take care of the blood pressure problems as opposed of having to do constant infusions. I am aware of the more recent controversies surrounding high level salt intake these days relative to kidney function.....of course, people have always scoffed had high salt intake due to its relationship with hypertension....but in your case you've got signs of dysautonomia with loss of orthostatic controls. My problem with fluid bolus infusions is they are extremely temporary....as long as it takes the kidneys to get rid of the extra fluid load..is as long as the benefit of volume improving pressure considerations would last....which in my opinion would be hours to a day or so after the last infusion in my opinion....I'm assuming your kidneys are as robust as you are!
Ok....those are my additional thoughts for right now....we'll be in contact.
KEEP YOUR ACTIVITY LEVELS UP....you want the stimulation of the physical side of the equation to stay high..as much as possible....I realize you're not feeling centered right now.....just choose some activity...even if not skating....how about some light machine work with the legs for example? Or is the fatigue factor overwhelming? Light jogs with some intermittent sprints? How about suicide runs on a soccer field for example....are you familiar with that term we like to use? Sprints of 5 yards then, 10, then, 15, then, 20....whatever you can tolerate reasonably well...start slow and work up....
The point is you need to keep stimulating that autonomic system with normal sorts of signals otherwise, it will "forget" things....if that makes sense....or it will tend to reset itself to another level of maximum effort and make it difficult for you to break through it making you less active as time goes on....Now, I'm talking like a wrestling coach.....I'll tell you the story on a wrestling friend of mine who we recently lost in November with autonomic dysfunction....NOT LIKE YOUR SITUATION....so completely different...but his keeping up physical activity and fitness even in the last weeks I believe helped him immensely throughout the course of things as he was navigating the rough part of his course.
Again, his case and yours I believe are entirely separate entities...but I place a huge premium when it comes to conservative and holistic types of measures on physical activity especially in someone who is trained at a high or elite level such as yourself.
Be well....write back soon and send an email....BTW, Parma Neurology has a facebook presence if you'd care to peruse the page....it's not much....just started it a little bit ago...but I'd be honored if you took a peak! HA!
https://www.facebook.com/parmaneurology
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Yes, I have a lovely friend in XXXXXXX I met her upon one of her trips to Melbourne actually. We’ve stayed in contact ever since. I’d definitely love to visit one day. It’s in my plans! Hopefully your sports teams will have evolved beyond ‘status quo’ by the time I make it there! ;-)
I’m not aware if he makes it back for the Academy of Neurology meetings at all. I’ll ask him when I see him early next month. He’s no stranger to my seemingly random questions. Ha! If you’ve been at all involved with Mayo, I know he did extensive training there (couldn’t tell you which location) surrounding the ANS.
It was by complete chance looking you up on here after the apparent HT glitch. I’m glad I did ☺
I’ll send you a link to those clips in your email. That way I won’t clog it up with video files. If you still for some reason can’t see or access them, I’ll try sending them through as files if you’re keen.
Thank you! Very keen to work my way through med school. I’ll do whatever it takes to get there & obviously be healthy enough to manage. My neurologist has played a large part in creating that passion and inspiration. I never thought I’d have learnt so much about the many Brodmann’s Areas prior to even entering medschool. He’s definitely got me hooked on neuro.
I actually discovered Mum’s nystagmus at 16/17 years old. I took it upon myself to learn what it was, and then asked my neurologist during one of my appointments if I was correct. Sure enough he noticed it too. She soon had an MRI as ordered by her doctor, but it was clean besides the 2mm lipoma. She never had a LP to check for oglioclonal bands. To this day, she shows no signs of MS.
That’s really interesting regarding your UK patient! I’d love to know the pathophys on how that progresses. (There’s a project for me!)
Yes, very familiar with the coup-contracoup form of brain trauma/injury. I studied it quite extensively prior to an exam ☺. The two posterior head injuries I sustained would date back to 2007 & 2008 I believe. So we’re extending well beyond months. I’ll mention it to my neurologist in regards to an EEG in any case. You are completely right though. It was the type of injury you can feel happening in slow motion, but there’s not a single thing you can do to stop it. I believe they say in figure skating, when performing a jump, upon landing your body absorbs the impact of 8x your body weight. This can increase depending on rotational speed and height. I can’t imagine that would be good for anyone's head! LOL!
I haven’t at all been concerned about motor neuron disease. Clearly there’s a lot of hysteria surrounding that entity at the moment since the Ice bucket challenge movement, but I do believe there’s another clinical entity at play. I should be clear though; as my weakness increases throughout the day, so to do the fasciculations. Atrophy on the other hand I don’t believe I’ve experienced much of. Although I have lost 30+lbs since late October and it’s clearly not all fat, so yes, maybe to a slight degree.
More than happy to keep exploring BFS.
Mestinon was ceased on a trial basis to see if it may have been ‘suddenly’ causing the fasciculations, & dysarthria ect in a neuromuscular blockade type phenomenon. Basically it would have been an incredibly easy fix if that were the case!
MUSK was ordered on the same day as AchR & the paraneoplastic Ab panel. Unfortunately there’s only one hospital in the country that runs that test, so the serum had to be sent off, and results could take 4-6 weeks. I’m really hoping they’re back this week.
In regards to the tremor, primidone wasn’t mentioned at the time. The increase in clonidine was enough to make it at least manageable without adding another drug to the mix, whilst still being low dose enough to not affect BP negatively.
The tremor was always worse on action and intention. Never at rest like I experience now. The orthostatic tremor is also a new experience since October.
When we talk about salt vs IV fluids. I do both. I have been consuming excessive amounts of salt (that was a shock to the system!) for years now, and it just hasn’t been enough. I lose oral liquids very quickly, even with increased sodium intake + fludrocortisone. But for some reason, when administering 1-2L IV fluids over 4-8hrs by body will hold onto this much better. On a purely dysautonomia level, my functioning is much better for 2 – 3 days post infusion. My neurologist doesn’t make a habit of prescribing this though. It’s only offered to those who are refractory to most other treatments. (Cause you know, sepsis!!)
I will be honest, the fatigue factor is huge at the moment. But I do understand how much physical activity helps, especially with the management of the dysautonomia. Hence why I never gave up my skating until I physically couldn’t keep going. I believe it was always one of my biggest assets in terms of health management. My issue with exercise currently, or should I say ACTIVITY, is that even minor ADLs are leading to such extreme weakness it’s seemingly impossible to find something suitable.
Example: Eat ¼ meal, notice bulbar weakness, & develop fasciculations of tongue, dysarthria and dysphagia.
Example 2: Teach 30 minutes of skating, no high level content involved from me. Basic skills. Notice girdle weakness, & proximal arm & leg weakness. Develop fasciculations in these areas + dysarthria.
Example 3: Shower + Wash hair = Proximal arm & leg weakness + fasciculations.
It’s frustrating me beyond belief to barely be able to perform basic ADLs. Some days they’re not even possible without assistance. Which is hard to believe when I think of the athlete I was not so long ago.
I really want to increase my exercise levels but I’m not sure how that would work, until this is clearly diagnosed and I'm on some form of management plan. This is the first time in over 6 years that I haven’t been able to find SOME way to exercise.
My deepest condolences for the loss of your friend, that’s terribly sad.
I Just dropped my Parma Neurology’s FB page and added a like! ☺ It will be very interesting to follow I’m sure.. Maybe if I ever make my way to the US I’ll pay PN an actual visit!
I’ll send you that email, then call it a night ☺ Enjoy your day! (ahh, timezones!)
I’m not aware if he makes it back for the Academy of Neurology meetings at all. I’ll ask him when I see him early next month. He’s no stranger to my seemingly random questions. Ha! If you’ve been at all involved with Mayo, I know he did extensive training there (couldn’t tell you which location) surrounding the ANS.
It was by complete chance looking you up on here after the apparent HT glitch. I’m glad I did ☺
I’ll send you a link to those clips in your email. That way I won’t clog it up with video files. If you still for some reason can’t see or access them, I’ll try sending them through as files if you’re keen.
Thank you! Very keen to work my way through med school. I’ll do whatever it takes to get there & obviously be healthy enough to manage. My neurologist has played a large part in creating that passion and inspiration. I never thought I’d have learnt so much about the many Brodmann’s Areas prior to even entering medschool. He’s definitely got me hooked on neuro.
I actually discovered Mum’s nystagmus at 16/17 years old. I took it upon myself to learn what it was, and then asked my neurologist during one of my appointments if I was correct. Sure enough he noticed it too. She soon had an MRI as ordered by her doctor, but it was clean besides the 2mm lipoma. She never had a LP to check for oglioclonal bands. To this day, she shows no signs of MS.
That’s really interesting regarding your UK patient! I’d love to know the pathophys on how that progresses. (There’s a project for me!)
Yes, very familiar with the coup-contracoup form of brain trauma/injury. I studied it quite extensively prior to an exam ☺. The two posterior head injuries I sustained would date back to 2007 & 2008 I believe. So we’re extending well beyond months. I’ll mention it to my neurologist in regards to an EEG in any case. You are completely right though. It was the type of injury you can feel happening in slow motion, but there’s not a single thing you can do to stop it. I believe they say in figure skating, when performing a jump, upon landing your body absorbs the impact of 8x your body weight. This can increase depending on rotational speed and height. I can’t imagine that would be good for anyone's head! LOL!
I haven’t at all been concerned about motor neuron disease. Clearly there’s a lot of hysteria surrounding that entity at the moment since the Ice bucket challenge movement, but I do believe there’s another clinical entity at play. I should be clear though; as my weakness increases throughout the day, so to do the fasciculations. Atrophy on the other hand I don’t believe I’ve experienced much of. Although I have lost 30+lbs since late October and it’s clearly not all fat, so yes, maybe to a slight degree.
More than happy to keep exploring BFS.
Mestinon was ceased on a trial basis to see if it may have been ‘suddenly’ causing the fasciculations, & dysarthria ect in a neuromuscular blockade type phenomenon. Basically it would have been an incredibly easy fix if that were the case!
MUSK was ordered on the same day as AchR & the paraneoplastic Ab panel. Unfortunately there’s only one hospital in the country that runs that test, so the serum had to be sent off, and results could take 4-6 weeks. I’m really hoping they’re back this week.
In regards to the tremor, primidone wasn’t mentioned at the time. The increase in clonidine was enough to make it at least manageable without adding another drug to the mix, whilst still being low dose enough to not affect BP negatively.
The tremor was always worse on action and intention. Never at rest like I experience now. The orthostatic tremor is also a new experience since October.
When we talk about salt vs IV fluids. I do both. I have been consuming excessive amounts of salt (that was a shock to the system!) for years now, and it just hasn’t been enough. I lose oral liquids very quickly, even with increased sodium intake + fludrocortisone. But for some reason, when administering 1-2L IV fluids over 4-8hrs by body will hold onto this much better. On a purely dysautonomia level, my functioning is much better for 2 – 3 days post infusion. My neurologist doesn’t make a habit of prescribing this though. It’s only offered to those who are refractory to most other treatments. (Cause you know, sepsis!!)
I will be honest, the fatigue factor is huge at the moment. But I do understand how much physical activity helps, especially with the management of the dysautonomia. Hence why I never gave up my skating until I physically couldn’t keep going. I believe it was always one of my biggest assets in terms of health management. My issue with exercise currently, or should I say ACTIVITY, is that even minor ADLs are leading to such extreme weakness it’s seemingly impossible to find something suitable.
Example: Eat ¼ meal, notice bulbar weakness, & develop fasciculations of tongue, dysarthria and dysphagia.
Example 2: Teach 30 minutes of skating, no high level content involved from me. Basic skills. Notice girdle weakness, & proximal arm & leg weakness. Develop fasciculations in these areas + dysarthria.
Example 3: Shower + Wash hair = Proximal arm & leg weakness + fasciculations.
It’s frustrating me beyond belief to barely be able to perform basic ADLs. Some days they’re not even possible without assistance. Which is hard to believe when I think of the athlete I was not so long ago.
I really want to increase my exercise levels but I’m not sure how that would work, until this is clearly diagnosed and I'm on some form of management plan. This is the first time in over 6 years that I haven’t been able to find SOME way to exercise.
My deepest condolences for the loss of your friend, that’s terribly sad.
I Just dropped my Parma Neurology’s FB page and added a like! ☺ It will be very interesting to follow I’m sure.. Maybe if I ever make my way to the US I’ll pay PN an actual visit!
I’ll send you that email, then call it a night ☺ Enjoy your day! (ahh, timezones!)
Brief Answer:
I look forward to updates as soon as feasible
Detailed Answer:
And I too am happy you decided to randomly check to see if I was per chance on this network. I was going to try and look up any answer I may have given you before when you said you sent in a "watered down" version of events. What is your screen name because I may be able to look it up. Do you still visit that network as well? I wish I could figure out what happened to any other question that had sent my way because it bothers to hear that someone wrote to me and I never returned the request.
I know it happens....electronic communications are so fallible these days.....not always the case.....possibly before you were yet of age (HA!) to own a telephone (cellular of course) but emails were much more reliable. There in an instant 100% of the time.....FAX'es as well....now, that everything goes by microwave antennae, even landlines are not reliable anymore....hardwiring your PC at home is no more able to guarantee a constant connection to services of the Internet or even LD calls than almost using a couple of cans with a long string! LOL.....
I look forward to the day that you may be able to visit XXXXXXX We have 2 medical schools of interests here in the city. One is directly managed by the XXXXXXX Clinic and the other is the School of Medicine of Case Western Reserve University. If you get an opportunity to make an application to CWRU...I interview candidates there....I'll tell you what the BEST ANSWERS may be to the interviewer's questions!
Now, to your issues. I'm very interested in knowing what the MUSK results might show. I recently had a patient who was negative to all standard chemistries and antibodies we test for MG but it wasn't till we did the SF EMG that we could prove anything. However, she had a pretty clear cut clinical picture of fluctuating weakness not to mention the droopy eyelids that got better after a quick cat nap.
Are you back on the Mestinon if it was proven not to be the cause of your fasciculatory activity? And BTW, seeing that activity and its distribution leads me less and less to be impressed with any diagnosis of motor neuron disease....you'll have to tell me more about the 30 lb weight loss....was that volitional? Your picture with the girls is snappy and I especially like the ARROW that clearly points to you although as bubbly and charming as you seem to be I thought that maybe you were the young lady in the center of the picture with the big smile and knees flexed up to the chest (I think her knees were flexed)....but at any rate....YOU (at the arrow) look very snappy!
I agree that the time frame between your head bonks and the fasciculations is a long time and it would've been much more convincing an argument had they appeared within a few months of the injury or had your injury to the head were more severe.....I'm glad honestly that your head was NOT injured more severly....so perhaps, that's really not related and is a red herring.
Muscle twitches and fasciculations are always believed to be a sign of chemical or physical imbalance. If your electrolytes, thyroids, and other chemistries are normal (and I'm sure your neurologist has made sure they are...including magnesium, calcium, etc.) then, unlikely that the fasics are caused by a metabolic process.
I will simply throw this out to you as an option to consider and I honestly don't know anybody in Australia who does this sort of thing but I know of a doctor here who performs biofeedback using surface EMG for people (mostly young musicians who suffer from injuries playing their instruments) who have tremors and dystonias. I believe that biofeedback of the form that Dr. XXXXXXX XXXXXXX employs is a very potentially effective means of therapy as it teaches the individual how to perform compensatory muscle movements and adjustments in order to counter the phenonmenon of essential tremors and possible fasciculations, etc.
In someone of your skill set, background, and training who also can muster the discipline to practice the exercises necessary to perform these maneuvers I would say you of all patients stand the best chance to be successful in such a program. Not only that, as I'm thinking about this....I'm wondering if Dr. XXXXXXX would not be able to set something up on a remote, long distance basis to work with you.....
Perhaps, an initial evaluation in person with 1 or 2 weeks of intensive training here in the U.S. would be enough to get you started and onboard with her program. Then, perhaps, you could be hooked up REMOTELY when you return to Australia and then, tie in through the internet and work with her as necessary to fine tune things.
It's just a crazy idea....but I think it's one for which technology exists that is not entirely ridiculous in terms of cost. The ridiculous cost might be the plane ticket over to see Dr. XXXXXXX in the first place and the one week stay which actually there are plenty of very nice and comfortable, good quality places to stay for weeks at a time at very reasonable rates.
And of course, a few moments that you have free I'm sure your friend and our family would be delighted in showing you our corner of the world so that you can tell the folks Down Under why XXXXXXX really is our motto once was, The Best Location in the Nation!
Obviously, discovering the root cause of the problem is the main goal and we should never lose focus of this but I think that interventions such as what Dr. XXXXXXX offers may be a small window of opportunity that you could take advantage of and get more mileage from in terms of here and now results instead of just trying to bandage symptoms to a disease process for which there is still no good solid diagnosis for at this time.
How about functional studies such as EEG and/or PET scan? And please remind me as I've gotten so excited thinking about the possibility of your getting some benefit from Dr. Riley's program...Have paraneoplastic types of disorders been screened for? And...I know this may sound a bit crazier still for a budding young medical professional.....but have you thought anything along the lines of acupuncture that could potentially help specifically with ORTHOSTASIS. There are a lot of articles on the subject of acupuncture and dysautonomias, such as MSA (Multisystem atrophy; Shy Drager disease) and POTS. I have had patients that have gotten benefit from POTS and acupuncture.
My friend who recently passed (and thank you for the condolences) did not try acupuncture for the MSA....not sure if he would've....perhaps toward the end but in all honesty the horses were out of the barn so I don't see it as having been very useful.....but have you looked at all into those modalities?
Thank you soooo much for Liking Parma Neurology. I will try and keep it up with some interesting things.....also, you can catch me doing my Radio Show on WHK 1420 AM on the 3rd Saturday of each month from 5-6p (Cleveland time) which is entitled the Ohio Physician's Educational Network (OPEN). I'm trying to figure out how to upload mp3 files of the show....for which Dr. XXXXXXX was actually a guest in December and will likely be a guest again either in February or April.
Well, my dear I'm going to hang up the phone right now because I have some patients to attend to and I will look forward to any updates you care to send my way. I was able to see the videos of your fasiculations. I've not looked at the entire MRI set of sequences but of what I've seen I haven't seen anything impressive (and I'm of course, you realize that we use the word "impressive" or in this case the negative to mean something VERY GOOD for you! LOL). That's why I think functional studies may be much more telling but they are costly to be sure and many doctors (as I've found from Australia) will not order them.
Be good....and be happy! Cheers!
Total time spent to this point on this query using physician directed services to review, research, and prepare an envoy to the patient is 236 minutes.
I look forward to updates as soon as feasible
Detailed Answer:
And I too am happy you decided to randomly check to see if I was per chance on this network. I was going to try and look up any answer I may have given you before when you said you sent in a "watered down" version of events. What is your screen name because I may be able to look it up. Do you still visit that network as well? I wish I could figure out what happened to any other question that had sent my way because it bothers to hear that someone wrote to me and I never returned the request.
I know it happens....electronic communications are so fallible these days.....not always the case.....possibly before you were yet of age (HA!) to own a telephone (cellular of course) but emails were much more reliable. There in an instant 100% of the time.....FAX'es as well....now, that everything goes by microwave antennae, even landlines are not reliable anymore....hardwiring your PC at home is no more able to guarantee a constant connection to services of the Internet or even LD calls than almost using a couple of cans with a long string! LOL.....
I look forward to the day that you may be able to visit XXXXXXX We have 2 medical schools of interests here in the city. One is directly managed by the XXXXXXX Clinic and the other is the School of Medicine of Case Western Reserve University. If you get an opportunity to make an application to CWRU...I interview candidates there....I'll tell you what the BEST ANSWERS may be to the interviewer's questions!
Now, to your issues. I'm very interested in knowing what the MUSK results might show. I recently had a patient who was negative to all standard chemistries and antibodies we test for MG but it wasn't till we did the SF EMG that we could prove anything. However, she had a pretty clear cut clinical picture of fluctuating weakness not to mention the droopy eyelids that got better after a quick cat nap.
Are you back on the Mestinon if it was proven not to be the cause of your fasciculatory activity? And BTW, seeing that activity and its distribution leads me less and less to be impressed with any diagnosis of motor neuron disease....you'll have to tell me more about the 30 lb weight loss....was that volitional? Your picture with the girls is snappy and I especially like the ARROW that clearly points to you although as bubbly and charming as you seem to be I thought that maybe you were the young lady in the center of the picture with the big smile and knees flexed up to the chest (I think her knees were flexed)....but at any rate....YOU (at the arrow) look very snappy!
I agree that the time frame between your head bonks and the fasciculations is a long time and it would've been much more convincing an argument had they appeared within a few months of the injury or had your injury to the head were more severe.....I'm glad honestly that your head was NOT injured more severly....so perhaps, that's really not related and is a red herring.
Muscle twitches and fasciculations are always believed to be a sign of chemical or physical imbalance. If your electrolytes, thyroids, and other chemistries are normal (and I'm sure your neurologist has made sure they are...including magnesium, calcium, etc.) then, unlikely that the fasics are caused by a metabolic process.
I will simply throw this out to you as an option to consider and I honestly don't know anybody in Australia who does this sort of thing but I know of a doctor here who performs biofeedback using surface EMG for people (mostly young musicians who suffer from injuries playing their instruments) who have tremors and dystonias. I believe that biofeedback of the form that Dr. XXXXXXX XXXXXXX employs is a very potentially effective means of therapy as it teaches the individual how to perform compensatory muscle movements and adjustments in order to counter the phenonmenon of essential tremors and possible fasciculations, etc.
In someone of your skill set, background, and training who also can muster the discipline to practice the exercises necessary to perform these maneuvers I would say you of all patients stand the best chance to be successful in such a program. Not only that, as I'm thinking about this....I'm wondering if Dr. XXXXXXX would not be able to set something up on a remote, long distance basis to work with you.....
Perhaps, an initial evaluation in person with 1 or 2 weeks of intensive training here in the U.S. would be enough to get you started and onboard with her program. Then, perhaps, you could be hooked up REMOTELY when you return to Australia and then, tie in through the internet and work with her as necessary to fine tune things.
It's just a crazy idea....but I think it's one for which technology exists that is not entirely ridiculous in terms of cost. The ridiculous cost might be the plane ticket over to see Dr. XXXXXXX in the first place and the one week stay which actually there are plenty of very nice and comfortable, good quality places to stay for weeks at a time at very reasonable rates.
And of course, a few moments that you have free I'm sure your friend and our family would be delighted in showing you our corner of the world so that you can tell the folks Down Under why XXXXXXX really is our motto once was, The Best Location in the Nation!
Obviously, discovering the root cause of the problem is the main goal and we should never lose focus of this but I think that interventions such as what Dr. XXXXXXX offers may be a small window of opportunity that you could take advantage of and get more mileage from in terms of here and now results instead of just trying to bandage symptoms to a disease process for which there is still no good solid diagnosis for at this time.
How about functional studies such as EEG and/or PET scan? And please remind me as I've gotten so excited thinking about the possibility of your getting some benefit from Dr. Riley's program...Have paraneoplastic types of disorders been screened for? And...I know this may sound a bit crazier still for a budding young medical professional.....but have you thought anything along the lines of acupuncture that could potentially help specifically with ORTHOSTASIS. There are a lot of articles on the subject of acupuncture and dysautonomias, such as MSA (Multisystem atrophy; Shy Drager disease) and POTS. I have had patients that have gotten benefit from POTS and acupuncture.
My friend who recently passed (and thank you for the condolences) did not try acupuncture for the MSA....not sure if he would've....perhaps toward the end but in all honesty the horses were out of the barn so I don't see it as having been very useful.....but have you looked at all into those modalities?
Thank you soooo much for Liking Parma Neurology. I will try and keep it up with some interesting things.....also, you can catch me doing my Radio Show on WHK 1420 AM on the 3rd Saturday of each month from 5-6p (Cleveland time) which is entitled the Ohio Physician's Educational Network (OPEN). I'm trying to figure out how to upload mp3 files of the show....for which Dr. XXXXXXX was actually a guest in December and will likely be a guest again either in February or April.
Well, my dear I'm going to hang up the phone right now because I have some patients to attend to and I will look forward to any updates you care to send my way. I was able to see the videos of your fasiculations. I've not looked at the entire MRI set of sequences but of what I've seen I haven't seen anything impressive (and I'm of course, you realize that we use the word "impressive" or in this case the negative to mean something VERY GOOD for you! LOL). That's why I think functional studies may be much more telling but they are costly to be sure and many doctors (as I've found from Australia) will not order them.
Be good....and be happy! Cheers!
Total time spent to this point on this query using physician directed services to review, research, and prepare an envoy to the patient is 236 minutes.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Sorry for my delay. Just one of those extra tough days!
The account was linked to my email YYYY@YYYY with my true name, XXXX I deactivated the account last night, ironically, so I’m not sure if you’ll still be able to look it up. I have considered signing up again, but with a different email that’s separate from the one I use primarily to communicate with my students, club and sporting organisation.
Honestly no need to worry. As you say, technology is fallible and I believe this has worked out for the better anyway. As someone who knows their presentation quite clearly, this is a much simpler platform to present it on, without any character limits. So, all in all, it’s worked out for the best. & oh my goodness! A couple of cans & a string was my entire childhood haha! That and making my own stilts, which was a couple of upturned buckets and string. Boy, was I easily entertained lol…
I’ll be sure to drop you a line if I’m planning a trip to or through Cleveland! ☺ That’s fantastic about the Medical schools too. I hadn’t seriously considered studying medicine abroad up until this point, although it has crossed my mind as something I’d ‘like’ to do. Studying in the US if at all possible, would actually make a huge amount of sense considering a large proportion of the advancements in the field I’d like to work in are coming straight from the US. Hmm, you’ve really got me curious now!
I’m also very interested in what the MUSK results will show. We ordered them back on the 4th Dec, and as of today 21st XXXXXXX they’re still not back. I know my neurologist plans to order the SFEMG, so it will be interesting how that turns out.
Interesting you mention the typical pattern of your other patient’s ocular weakness by responding to naps. That is generally speaking, my pattern too. However, recently I’ve been waking up unable to open my right eye at all due to the weakness. That, along with an increase in the sensation of a dry mouth that ‘appears’ to be characteristic of LEMS. You could argue the increase in the sensation of dry mouth is just a worsening of prior autonomic dysfunction (plausible), and all other feelings of weakness generally improve after rest, not worsen, so it’s potentially just a red herring.
Yes, back on the Mestinon. It helps to a degree. I’m better on it than off, but it’s clearly not enough in terms of treatment at this point.
Glad we’re on the same page re: MND. I was almost certain that wasn’t the case, but hey, I wouldn’t be the first young person to face the diagnosis..
The weight loss has been continual since the sepsis. Unintentional, and quite fast if you consider that I wasn’t big or even close to overweight to begin with. Now I’m underweight, and not at all looking healthy. My BMR seems to have fired up since I was admitted with Sepsis and has been the same since. Even with added nutritional supplements such as fortisip (not sure if you’re familiar with that? 200cal per 100ml), the weight has still just been falling off. The dysphagia may have some affect, but as I said, I’m doing my best to replace calories throughout the day, so it’s not adding up somehow.
Glad you enjoyed the picture and that “fabulous” arrow. I must say, I miss the version of ‘Paint’ from PC’s in the 90’s. The equivalent on Mac just doesn’t cut it ;-) That girl you thought was me, is about 8 years my XXXXXXX and I was attached to her hip when I started skating as a little girl. She’s always had that same smile; I adored her. She’s living abroad in London currently.
Yes, my neurologist ordered a large battery of tests. In terms of all metabolic processes everything came back normal, so we were left with something physical. We also screened for paraneoplasms. (Anti Hu, Anti Yo, Anti Ri, Anti CV2, Anti Ampiphysin, Anti PNMA2/TA, Anti SOX1) all negative. We’re discussing sending the Ganglionic AchR Abs to the US, as well as LRP4 depending on MUSK.
Personally, I’m curious about the DPPX potassium channel AB. The XXXXXXX Academy of Neurology released a journal article recently. Although their sample size was small, the clinical pictures’ presented by the patients is somewhat similar to my case. Either way, very interesting!
Wow! I’ve heard of similar techniques I believe being used during deep brain stimulation, but never EMG. That’s really interesting. I certainly don’t know of it occurring anywhere here in Australia.
I’m all for crazy ideas, those are often the best ones! If you have any information on this, please feel free to shoot me an email with any details. I would love to explore it further. How have you managed to get me all excited about the prospect of this, from all the way on the other side of the world? ☺ ☺ ☺
Of course the opportunity to see XXXXXXX is very exciting too! Its so very generous that your family would show me around, that’s so lovely!
In terms of functional studies, as yet we haven’t ordered a PET scan or EEG. I haven’t had any typical seizure activity up until this point, apart from an increase in myoclonic type movements. I’m seeing my neurologist on the 2nd Feb, so I will mention this and all we’ve discussed then.
I personally haven’t tried acupuncture as an additional/alternative treatment for the dysautonomia. I only ever used that form of therapy for injuries, as I was always very careful in regards to medication use when I was competing. I’ll do some research, I’ll by no means turn my nose up to any treatment! Way too much living to do! ☺
More than happy to like Parma Neurology! I actually prefer when my Facebook time benefits my brain somehow. I like to think that means any procrastination is somewhat justified HA!
Goodness you are busy. I’ll try to catch one of these radio shows too. I just had a quick google, and it appears I should be able to listen from here online so, easy as!
I’m glad you don’t believe my MRI is impressive ;) LOL. Personally, I thought it was rather pretty, but that was the neuro love coming out and probably a slight bit of pride because it’s been two years since I’ve last pulled up one of my own MRI’s & now I can look at any slice and know exactly where I am. Probably more excited about that than I should be. But anyway!! The excitement and motivation keeps pushing you forward ☺
Hope you had a good day yesterday, and have an even better one today. As I said, feel free to send me any info re: Dr XXXXXXX or anything else you feel that is relevant.
I can’t explain how grateful I am for all of your help. You have been brilliant and given me some great prospects to explore. Thank you SO much!
All the best,
XXXX
The account was linked to my email YYYY@YYYY with my true name, XXXX I deactivated the account last night, ironically, so I’m not sure if you’ll still be able to look it up. I have considered signing up again, but with a different email that’s separate from the one I use primarily to communicate with my students, club and sporting organisation.
Honestly no need to worry. As you say, technology is fallible and I believe this has worked out for the better anyway. As someone who knows their presentation quite clearly, this is a much simpler platform to present it on, without any character limits. So, all in all, it’s worked out for the best. & oh my goodness! A couple of cans & a string was my entire childhood haha! That and making my own stilts, which was a couple of upturned buckets and string. Boy, was I easily entertained lol…
I’ll be sure to drop you a line if I’m planning a trip to or through Cleveland! ☺ That’s fantastic about the Medical schools too. I hadn’t seriously considered studying medicine abroad up until this point, although it has crossed my mind as something I’d ‘like’ to do. Studying in the US if at all possible, would actually make a huge amount of sense considering a large proportion of the advancements in the field I’d like to work in are coming straight from the US. Hmm, you’ve really got me curious now!
I’m also very interested in what the MUSK results will show. We ordered them back on the 4th Dec, and as of today 21st XXXXXXX they’re still not back. I know my neurologist plans to order the SFEMG, so it will be interesting how that turns out.
Interesting you mention the typical pattern of your other patient’s ocular weakness by responding to naps. That is generally speaking, my pattern too. However, recently I’ve been waking up unable to open my right eye at all due to the weakness. That, along with an increase in the sensation of a dry mouth that ‘appears’ to be characteristic of LEMS. You could argue the increase in the sensation of dry mouth is just a worsening of prior autonomic dysfunction (plausible), and all other feelings of weakness generally improve after rest, not worsen, so it’s potentially just a red herring.
Yes, back on the Mestinon. It helps to a degree. I’m better on it than off, but it’s clearly not enough in terms of treatment at this point.
Glad we’re on the same page re: MND. I was almost certain that wasn’t the case, but hey, I wouldn’t be the first young person to face the diagnosis..
The weight loss has been continual since the sepsis. Unintentional, and quite fast if you consider that I wasn’t big or even close to overweight to begin with. Now I’m underweight, and not at all looking healthy. My BMR seems to have fired up since I was admitted with Sepsis and has been the same since. Even with added nutritional supplements such as fortisip (not sure if you’re familiar with that? 200cal per 100ml), the weight has still just been falling off. The dysphagia may have some affect, but as I said, I’m doing my best to replace calories throughout the day, so it’s not adding up somehow.
Glad you enjoyed the picture and that “fabulous” arrow. I must say, I miss the version of ‘Paint’ from PC’s in the 90’s. The equivalent on Mac just doesn’t cut it ;-) That girl you thought was me, is about 8 years my XXXXXXX and I was attached to her hip when I started skating as a little girl. She’s always had that same smile; I adored her. She’s living abroad in London currently.
Yes, my neurologist ordered a large battery of tests. In terms of all metabolic processes everything came back normal, so we were left with something physical. We also screened for paraneoplasms. (Anti Hu, Anti Yo, Anti Ri, Anti CV2, Anti Ampiphysin, Anti PNMA2/TA, Anti SOX1) all negative. We’re discussing sending the Ganglionic AchR Abs to the US, as well as LRP4 depending on MUSK.
Personally, I’m curious about the DPPX potassium channel AB. The XXXXXXX Academy of Neurology released a journal article recently. Although their sample size was small, the clinical pictures’ presented by the patients is somewhat similar to my case. Either way, very interesting!
Wow! I’ve heard of similar techniques I believe being used during deep brain stimulation, but never EMG. That’s really interesting. I certainly don’t know of it occurring anywhere here in Australia.
I’m all for crazy ideas, those are often the best ones! If you have any information on this, please feel free to shoot me an email with any details. I would love to explore it further. How have you managed to get me all excited about the prospect of this, from all the way on the other side of the world? ☺ ☺ ☺
Of course the opportunity to see XXXXXXX is very exciting too! Its so very generous that your family would show me around, that’s so lovely!
In terms of functional studies, as yet we haven’t ordered a PET scan or EEG. I haven’t had any typical seizure activity up until this point, apart from an increase in myoclonic type movements. I’m seeing my neurologist on the 2nd Feb, so I will mention this and all we’ve discussed then.
I personally haven’t tried acupuncture as an additional/alternative treatment for the dysautonomia. I only ever used that form of therapy for injuries, as I was always very careful in regards to medication use when I was competing. I’ll do some research, I’ll by no means turn my nose up to any treatment! Way too much living to do! ☺
More than happy to like Parma Neurology! I actually prefer when my Facebook time benefits my brain somehow. I like to think that means any procrastination is somewhat justified HA!
Goodness you are busy. I’ll try to catch one of these radio shows too. I just had a quick google, and it appears I should be able to listen from here online so, easy as!
I’m glad you don’t believe my MRI is impressive ;) LOL. Personally, I thought it was rather pretty, but that was the neuro love coming out and probably a slight bit of pride because it’s been two years since I’ve last pulled up one of my own MRI’s & now I can look at any slice and know exactly where I am. Probably more excited about that than I should be. But anyway!! The excitement and motivation keeps pushing you forward ☺
Hope you had a good day yesterday, and have an even better one today. As I said, feel free to send me any info re: Dr XXXXXXX or anything else you feel that is relevant.
I can’t explain how grateful I am for all of your help. You have been brilliant and given me some great prospects to explore. Thank you SO much!
All the best,
XXXX
Brief Answer:
Let me know if I can facilitate you with any recommendations---
Detailed Answer:
---in order to study Medicine here...or anywhere for that matter. You've proven your qualification at least as a pre-medical student and are fluent in using more vocabulary and acronyms than most 3rd year medical students...maybe even some medical residents! HAHA!
I would be very excited to hear of any plans you'd entertain for visiting XXXXXXX ..we are quite comfortable weatherwise in late spring through about mid-summer. Then, around the beginning of September things literally start heading South.....WAY South! Imagine the XXXXXXX of your friend who lives here if you were to come and stay for a spell....maybe we could present your case as an unknown to the Neurology Service at the VA Medical Center where I teach and round if there's no firm diagnosis yet.
How do we get you to get weight put on....and what is your BMI these days? You say your metabolism is revved up? You're not dealing with issues of colitis or anything like that are you?
If you cruised the Parma Neurology site on Facebook you would've seen XXXXXXX XXXXXXX posted there since she was a recent guest of mine on OPEN (The Ohio Physicians Educational Network). I believe there is a link to her website....or maybe not....lemme check on that.
I think it's best to get the SF EMG done and/or MUSK results before making major changes to the Mestinon or choosing any other MG type of therapy. That way there's a solid diagnosis. I understand why you may think in terms of LEMS and certainly that should be considered. Has a regular EMG been done on you yet to look at the fasics?
I'm less in favor of an EEG now knowing more information and even if those fasics were centrally based (meaning originating from the Black Box upstairs) I'm sure their voltages are so tiny and isolated that nothing will show up on a surface EEG. So, perhaps to help you on costs (if you're having to foot any of this bill) I would the EEG aside for the moment. Same thing for PET scan....I'd wait on any other high flyin' tests until we've got more reason to go in those directions.
So finally, to be sure....your email is YYYY@YYYY ? It just the FB account you deactivated?
If that email account is correct then, I will make sure you get the info. on Dr. XXXXXXX so can look at her website and then, potentially contact her....but again, waiting on the pending results, in my opinion, is the best course of action you can take right now....don't want to put too many irons into the fire at the same time. I'd really like to find out how to get calories to stick to you. If you want to send me your weight and height, I'll figure out your BMI....obviously you know there are calculators to do that sort of thing....
Anyways, my dear...time is nigh and I must get out to see some patients. Wonderful chatting with you again....I think you're amazing and will be so proud when one day I can say....that doctor who just discovered the etiology and cure for dysautonomia.....I once MIS-identified her in a skating picture.....I'll go on to say, "Why I didn't pick the best lookin gal out of the bunch to begin with I can't say....but I miscued!" LOL.....
You have a terrific day today....it's relatively beginning for us here.....and ALMOST beginning for you TOMORROW! Be good me lady! Keep smiling....
Let me know if I can facilitate you with any recommendations---
Detailed Answer:
---in order to study Medicine here...or anywhere for that matter. You've proven your qualification at least as a pre-medical student and are fluent in using more vocabulary and acronyms than most 3rd year medical students...maybe even some medical residents! HAHA!
I would be very excited to hear of any plans you'd entertain for visiting XXXXXXX ..we are quite comfortable weatherwise in late spring through about mid-summer. Then, around the beginning of September things literally start heading South.....WAY South! Imagine the XXXXXXX of your friend who lives here if you were to come and stay for a spell....maybe we could present your case as an unknown to the Neurology Service at the VA Medical Center where I teach and round if there's no firm diagnosis yet.
How do we get you to get weight put on....and what is your BMI these days? You say your metabolism is revved up? You're not dealing with issues of colitis or anything like that are you?
If you cruised the Parma Neurology site on Facebook you would've seen XXXXXXX XXXXXXX posted there since she was a recent guest of mine on OPEN (The Ohio Physicians Educational Network). I believe there is a link to her website....or maybe not....lemme check on that.
I think it's best to get the SF EMG done and/or MUSK results before making major changes to the Mestinon or choosing any other MG type of therapy. That way there's a solid diagnosis. I understand why you may think in terms of LEMS and certainly that should be considered. Has a regular EMG been done on you yet to look at the fasics?
I'm less in favor of an EEG now knowing more information and even if those fasics were centrally based (meaning originating from the Black Box upstairs) I'm sure their voltages are so tiny and isolated that nothing will show up on a surface EEG. So, perhaps to help you on costs (if you're having to foot any of this bill) I would the EEG aside for the moment. Same thing for PET scan....I'd wait on any other high flyin' tests until we've got more reason to go in those directions.
So finally, to be sure....your email is YYYY@YYYY ? It just the FB account you deactivated?
If that email account is correct then, I will make sure you get the info. on Dr. XXXXXXX so can look at her website and then, potentially contact her....but again, waiting on the pending results, in my opinion, is the best course of action you can take right now....don't want to put too many irons into the fire at the same time. I'd really like to find out how to get calories to stick to you. If you want to send me your weight and height, I'll figure out your BMI....obviously you know there are calculators to do that sort of thing....
Anyways, my dear...time is nigh and I must get out to see some patients. Wonderful chatting with you again....I think you're amazing and will be so proud when one day I can say....that doctor who just discovered the etiology and cure for dysautonomia.....I once MIS-identified her in a skating picture.....I'll go on to say, "Why I didn't pick the best lookin gal out of the bunch to begin with I can't say....but I miscued!" LOL.....
You have a terrific day today....it's relatively beginning for us here.....and ALMOST beginning for you TOMORROW! Be good me lady! Keep smiling....
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you so much. That’s a huge compliment! I’m itching to get into medical school, but I know I’m far off in terms of completing all of the pre-requisites to do so. However, I do want this more than anything, so I’ll keep plugging away! (If only fluency in med-term & diagnostics was enough these days!)
I’ll definitely send you an email if I end up with plans to visit your part of the world. Health wise, I’m better in the cooler months, but I can’t say I’ve experienced a northern hemisphere’s winter before! Spring sounds like a good time for me ☺ I’d be open to presenting my case at the Neurology Service where you work if the opportunity arose. Sometimes, when you’re a little bit obscure, the more brains, the better!
I wish I knew how to get weight to stick at the moment, then we can worry about putting it back on. I’m at a BMI of about 17.4 currently. Obviously not the most worrisome BMI in the world, but I don’t at all carry it well. It would be nice to not be told how terrible I look for a change haha!.. Anyway, will discuss that with my Neurologist on the 2nd. No issues related to colitis, thankfully.
I didn’t find the link to Dr. Riley’s site on Parma Neurology’s FB, but I did a Google search and found her website I believe. Her work looks really interesting! Feel free to send me anything else you have though!
Yes, a regular/complex EMG was done on the 23rd December. Unfortunately it was one of the only times I had no fasciculatory activity. I recall I had one muscle that did display something abnormal, but I don’t have the official results, so I’m unsure as to what that meant, if anything.
Hopefully I’ll be booked in for the SF EMG soon. My neurologist runs those privately so it should only take a week or two for that to happen after our appointment. Hopefully the MUSK results will be returning soon.
As for my email address, to confirm, it’s: YYYY@YYYY
The HT account linked to that was deactivated.
I feel I have taken up far too much of your time, but I am SO very grateful for all of the help that you have given. You have certainly gone above and beyond! I hope you have had a wonderful Friday, and are set to have a great weekend.
All the best, thank you so very much.
With thanks,
XXXX
I’ll definitely send you an email if I end up with plans to visit your part of the world. Health wise, I’m better in the cooler months, but I can’t say I’ve experienced a northern hemisphere’s winter before! Spring sounds like a good time for me ☺ I’d be open to presenting my case at the Neurology Service where you work if the opportunity arose. Sometimes, when you’re a little bit obscure, the more brains, the better!
I wish I knew how to get weight to stick at the moment, then we can worry about putting it back on. I’m at a BMI of about 17.4 currently. Obviously not the most worrisome BMI in the world, but I don’t at all carry it well. It would be nice to not be told how terrible I look for a change haha!.. Anyway, will discuss that with my Neurologist on the 2nd. No issues related to colitis, thankfully.
I didn’t find the link to Dr. Riley’s site on Parma Neurology’s FB, but I did a Google search and found her website I believe. Her work looks really interesting! Feel free to send me anything else you have though!
Yes, a regular/complex EMG was done on the 23rd December. Unfortunately it was one of the only times I had no fasciculatory activity. I recall I had one muscle that did display something abnormal, but I don’t have the official results, so I’m unsure as to what that meant, if anything.
Hopefully I’ll be booked in for the SF EMG soon. My neurologist runs those privately so it should only take a week or two for that to happen after our appointment. Hopefully the MUSK results will be returning soon.
As for my email address, to confirm, it’s: YYYY@YYYY
The HT account linked to that was deactivated.
I feel I have taken up far too much of your time, but I am SO very grateful for all of the help that you have given. You have certainly gone above and beyond! I hope you have had a wonderful Friday, and are set to have a great weekend.
All the best, thank you so very much.
With thanks,
XXXX
Brief Answer:
I'm certain that you look GREAT at whatever BMI you've got!
Detailed Answer:
Glad you wrote back to update me on some of the information I was wondering about. Thank you!
I wish I had a great idea as to what is going on with your weight. In general terms, whenever there is an unintentional weight loss the possibilities that pop into my wheelhouse of possibilities are:
1. Thyroid gland
2. Adrenal gland
3. Neoplastic/Paraneoplastic process
4. Autoimmune process
5. Colitic/malabsorptive process
6. Poor nutrition/Psychiatric illness
So obviously, the best cure for your weight loss is to have a diagnosis and to treat this entity appropriately in order to support weight gain. Have you been tested and cleared for all those above processes? I know that some of them you have.
With respect to hyperthyroid function-- given the weight loss as the clinical indicator have you had: TSH, FT4, T3/FT3, TSH receptor Ab's, and Thyroid Stimulating Ab's
In terms of the short run solution to gain weight is it possible for you to solicit a nutrition consult with a specialist who can measure your BMR and come up with a plan to get concentrated caloric supplementation into you without suppressing your appetite and still allowing you to gain surplus calories to the tune of say, 3500 calories/week?
This would work out to about 0.5 kg./week.
Once again, I wish you well (and would be thrilled to hear that perhaps, someone may wish to give you a birthday gift for a trip to Cleveland! HAHA!)....I have your email address and you have mine don't you? YYYY@YYYY . I know this network only allows 3 questions per round so I understand if you are unable to return updates on your test results. Perhaps, if anything really exciting comes up you can let me know.
Unfortunately, we really can't use email to discuss sensitive medical information since that's a HIPAA violation (even though I'm not sure HIPAA really applies to you in Australia--- but it applies to me being a U.S. licensed physician) so we can only exchange such information on Healthcaremagic.com's platform or similar networks/systems.
Be well and happy in the warmer Southern Hemisphere....though warmer weather is sure to come about in the next several months! Hint! Hint!! LOL....
I'm certain that you look GREAT at whatever BMI you've got!
Detailed Answer:
Glad you wrote back to update me on some of the information I was wondering about. Thank you!
I wish I had a great idea as to what is going on with your weight. In general terms, whenever there is an unintentional weight loss the possibilities that pop into my wheelhouse of possibilities are:
1. Thyroid gland
2. Adrenal gland
3. Neoplastic/Paraneoplastic process
4. Autoimmune process
5. Colitic/malabsorptive process
6. Poor nutrition/Psychiatric illness
So obviously, the best cure for your weight loss is to have a diagnosis and to treat this entity appropriately in order to support weight gain. Have you been tested and cleared for all those above processes? I know that some of them you have.
With respect to hyperthyroid function-- given the weight loss as the clinical indicator have you had: TSH, FT4, T3/FT3, TSH receptor Ab's, and Thyroid Stimulating Ab's
In terms of the short run solution to gain weight is it possible for you to solicit a nutrition consult with a specialist who can measure your BMR and come up with a plan to get concentrated caloric supplementation into you without suppressing your appetite and still allowing you to gain surplus calories to the tune of say, 3500 calories/week?
This would work out to about 0.5 kg./week.
Once again, I wish you well (and would be thrilled to hear that perhaps, someone may wish to give you a birthday gift for a trip to Cleveland! HAHA!)....I have your email address and you have mine don't you? YYYY@YYYY . I know this network only allows 3 questions per round so I understand if you are unable to return updates on your test results. Perhaps, if anything really exciting comes up you can let me know.
Unfortunately, we really can't use email to discuss sensitive medical information since that's a HIPAA violation (even though I'm not sure HIPAA really applies to you in Australia--- but it applies to me being a U.S. licensed physician) so we can only exchange such information on Healthcaremagic.com's platform or similar networks/systems.
Be well and happy in the warmer Southern Hemisphere....though warmer weather is sure to come about in the next several months! Hint! Hint!! LOL....
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you! I topped up last question because I knew it wouldn’t be appropriate on your end to converse via email in regards to sensitive medical information. I also didn’t feel right that you weren’t being paid for time. So it was no issue at all.
The only test in regards to Thyroid function that was run on my recent panel was TSH. So it will definitely be worth running a more thorough panel.
We haven’t looked into any adrenal studies for some time, although previously there have been no issues.
Selections of paraneoplastic processes have been ruled out, as you’re aware. We haven’t specifically scanned for any, but at this stage there are no pressing symptoms that would point to any one malignancy. (Localised pain, swelling, pruritus, abdominal distension, or night sweats etc.)
We are still suspecting that this syndrome of sorts is autoimmune in nature, so potentially the weight loss is of that process too.
I don’t have any colitic issues, but malabsorptive & gastric dysmotility issues are a common occurrence amongst various dysautonomias. That’s something I wouldn’t rule out considering the stress my body has been under of late.
I do plan on requesting a dietetics referral from my neurologist when I see him in just over a week. So hopefully we can get something happening along the lines of what you’ve suggested. 0.5kg per/week sounds reasonable!
Oh goodness, I would be very happy if someone were to give me a birthday gift of a trip to XXXXXXX too, however I fear it will be self funded, so if it’s to happen, I best start saving my pennies! LOL!
Enjoy the rest of your weekend,
XXXX
The only test in regards to Thyroid function that was run on my recent panel was TSH. So it will definitely be worth running a more thorough panel.
We haven’t looked into any adrenal studies for some time, although previously there have been no issues.
Selections of paraneoplastic processes have been ruled out, as you’re aware. We haven’t specifically scanned for any, but at this stage there are no pressing symptoms that would point to any one malignancy. (Localised pain, swelling, pruritus, abdominal distension, or night sweats etc.)
We are still suspecting that this syndrome of sorts is autoimmune in nature, so potentially the weight loss is of that process too.
I don’t have any colitic issues, but malabsorptive & gastric dysmotility issues are a common occurrence amongst various dysautonomias. That’s something I wouldn’t rule out considering the stress my body has been under of late.
I do plan on requesting a dietetics referral from my neurologist when I see him in just over a week. So hopefully we can get something happening along the lines of what you’ve suggested. 0.5kg per/week sounds reasonable!
Oh goodness, I would be very happy if someone were to give me a birthday gift of a trip to XXXXXXX too, however I fear it will be self funded, so if it’s to happen, I best start saving my pennies! LOL!
Enjoy the rest of your weekend,
XXXX
Brief Answer:
Expanding on simple things always best way to go first
Detailed Answer:
Hi there good looking! And that's the truth you realize. You are just a wonderful person through and through would be the best way to describe this lyoung lassie from Down Under.
Don't forget that expanding the simple things in life usually yields the most satisfying results so I would definitely try and get more detailed thyroid studies first ahead of anything more complex, sophisticated, or costly. I would of course, focus on those entities where WEIGHT LOSS is the major clinical manifestation (i.e. obviously, we're not expecting to be looking at a HYPOthyroid situation), right?
I think that the use of XXXXXXX Riley's techniques of biofeedback, while less likely to give direct results on your condition of fasciculations since I believe that is happening in response to whatever the organic/pathophysiological process is that's occurring--- I was thinking yesterday that I see no reason NOT TO GIVE THE TECHNIQUE some possibility of functioning to treat the pandysautonomia in some respect. In other words, why can't you be trained to recalibrate your autonomic function set point if she were focus efforts say on blood pressure? I realize it's a long shot.....but it may be worth having a discussion on it....please feel free to contact her through her website if you would like to and let her know of how you got connected to her and let's just solicit an opinion from her???
Or wait for more test results to come back. If MUSK came back positive or if SF EMG were definite as to a diagnosis then, you'd have even more robust information to give her which could allow a better prognostic decision on her part as to how much utility this technique could have for you.
I am looking forward to see you here in XXXXXXX at some point in the future enjoying the hospitality, the newly constructed downtown, midtown, and uptown regions, and being able to watch toilet bowl water swirl in the opposite direction from where you're at....or marvel at the fact, that the water doesn't just jettison straight up and out into the air given the fact, that WE ARE pointing UP! NOT!!!!!
hahahahaha!
Be good (you're that already)....be happy (keep that wonderful smile on that face at all times.....that's a medical order).....and why not get in touch with your XXXXXXX friend to get you information on medical schools in town? I bet she'd go nuts if she heard you say that!! HAHA!
Ciao and Cheers my dear!
Total time spent by direct physician effort 319 minutes for review, research, and response envoy to patient.
Expanding on simple things always best way to go first
Detailed Answer:
Hi there good looking! And that's the truth you realize. You are just a wonderful person through and through would be the best way to describe this lyoung lassie from Down Under.
Don't forget that expanding the simple things in life usually yields the most satisfying results so I would definitely try and get more detailed thyroid studies first ahead of anything more complex, sophisticated, or costly. I would of course, focus on those entities where WEIGHT LOSS is the major clinical manifestation (i.e. obviously, we're not expecting to be looking at a HYPOthyroid situation), right?
I think that the use of XXXXXXX Riley's techniques of biofeedback, while less likely to give direct results on your condition of fasciculations since I believe that is happening in response to whatever the organic/pathophysiological process is that's occurring--- I was thinking yesterday that I see no reason NOT TO GIVE THE TECHNIQUE some possibility of functioning to treat the pandysautonomia in some respect. In other words, why can't you be trained to recalibrate your autonomic function set point if she were focus efforts say on blood pressure? I realize it's a long shot.....but it may be worth having a discussion on it....please feel free to contact her through her website if you would like to and let her know of how you got connected to her and let's just solicit an opinion from her???
Or wait for more test results to come back. If MUSK came back positive or if SF EMG were definite as to a diagnosis then, you'd have even more robust information to give her which could allow a better prognostic decision on her part as to how much utility this technique could have for you.
I am looking forward to see you here in XXXXXXX at some point in the future enjoying the hospitality, the newly constructed downtown, midtown, and uptown regions, and being able to watch toilet bowl water swirl in the opposite direction from where you're at....or marvel at the fact, that the water doesn't just jettison straight up and out into the air given the fact, that WE ARE pointing UP! NOT!!!!!
hahahahaha!
Be good (you're that already)....be happy (keep that wonderful smile on that face at all times.....that's a medical order).....and why not get in touch with your XXXXXXX friend to get you information on medical schools in town? I bet she'd go nuts if she heard you say that!! HAHA!
Ciao and Cheers my dear!
Total time spent by direct physician effort 319 minutes for review, research, and response envoy to patient.
Note: For further queries, consult a joint and bone specialist, an Orthopaedic surgeon. Book a Call now.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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