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Question: Need a real Dr. House to answer this!
I've been diagnosed with various idiopathic diseases (conversion disorder, migraine syndrome, etc) because doctors just throw their hands up and prescribe various medications for my symptoms.
It started two years ago in the form of an 'attack' of sorts - suddenly felt dizzy, started trembling and felt like I was going to have a seizure. It dissipated afterward, but my balance/gait was fairly compromised afterward. "Waves" of dizziness swept over me for a week - my GP diagnosed an inner ear infection, and I started antibiotics and it went away - albeit very slowly. Over the past two years, it's gone from good to bad to worse to better to worse and I have no answers.
I first went after the brain, getting an MRI and seeing a neurologist - nothing significant was found. About six months ago I developed internal tremors as an additional symptom.
Earlier this year, I felt so crummy I ended up in the ER. They ran some tests, and cleared me to go home. Upon receiving a copy of the bloodwork I noticed that my direct and total bilirubin (as well as ALT/AST/GGT) were rather high. No jaundice or anything, but I did some research and saw that this is a sign of liver disease. I then saw that liver disease can affect balance and dizziness, so I went after testing that. I quit drinking completely (I drank because it helped my balance, in fact it completely negated 90% of my symptoms. I brought this up with several doctors, and they didn't know what to make of it.)
Well, three ultrasounds and five rounds of bloodwork later, nothing can be found wrong with my liver. A third one reported 'slightly coarse' texture but liver disease was ruled out based upon the rest of the report. I have also gotten two Fibroscans which both read back at 4.1 and 4.9 respectively - which I am led to believe would absolutely 100% rule out any cirrhosis. I'm aware biopsy is the 'gold standard' however to my knowledge a Fibroscan is almost preferrable in these scenarios. Either way, I have had two just to make sure the first one was not a false negative - from my understanding, this is as close to a conclusive test as I am going to get regarding my liver, and none of my doctors see 'grounds' for a biopsy. My mother can attest to this - I have been told by over 5 different medical professionals that I do not have liver disease. I am still suspicious, but I am at a loss at this end. I recently had a contrast CT scan which did not see anything with my liver, however found a 6mm cyst on my left kidney, and two 3mm ‘lesions’ on my right kidney – these were not seen in all three ultrasounds I had performed.
That brings this to now - I'm frustrated, I cannot work or function, and I am only 29 years old. Balance/slight motor function issues, waves of dizziness, lower back pain, pressure in my head (feels like cotton balls are up there) and constant anxiety. I also have horrible brain fog that seems to 'peak' around 3pm and get better around 5pm. Sometimes my chest feels tight, and my jaw hurts at times. Not sure if that is even relevant.
Recently, my hb1ac was at the ‘prediabetic’ end, and I have had high blood glucose in the past (one time was 9.5 and the upper limit of normal was 7)
Summary:
Medical History:
- Appendix taken out as child
- Root canal performed four years ago (same time frame early head pressure began) - this tooth is painful to brush to this day (again not sure if medically relevant) - considering having the tooth removed altogether
- Possible 'abscess' (?) on lower gumline - unsure how to proceed with this
- Intolerance to gluten (currently awaiting testing for celiac)
- Diagnosed with Meniere's Disease - however this is doubtful at this point, as many symptoms have since surpassed the limitations of this disease
- History of high ferritin and iron saturation - hemochromatosis - donating blood to treat this condition
Symptoms:
-Balance/gait issues
-waves of dizziness
-slight motor problems
-internal/resting tremor
-head pressure/cotton ball feeling
-really bad anxiety
-chest tightness
-altered levels of consciousness (derealization?) and memory problems
-sometimes my pupils dilate, around the same time I have ‘migraine auras’
-muscle twitching, sometimes involuntary
***** To be noted that any form of sedative - alcohol, benzodiazepines and marijuana – alleviates 90% of these symptoms.*****
Tests performed:
-CT scan of brain (normal) - non contrast
-MRI of brain (normal except for sinus polyps/cysts) - non contrast
-EKG (normal)
-Chest X-ray (normal)
-3 abd. ultrasounds (normal, save the third one, which reported a 'slight' coarseness on liver declared a 'subtle finding')
-6 rounds of bloodwork (high bilirubin, direct and total, once, ferritin usually higher end of normal(started at over double normal), IgA was high twice - tested negative for Lyme – tested for ammonia and it was low despite being a smoker) – since quitting drinking all liver function tests have come back perfect
-2 fibroscans ( 4.9 and 4.1 respectively - little to no fibrosis - normal)
-contrast CT scan (all organs normal except kidneys – lesions found in right kidney and a cyst in left kidney)
Total findings on tests:
-2 3mm lesions on right kidney, 6mm cyst on left – these are new, no previous scans have picked them up
-‘mildly coarse liver’ as a subtle finding on my third ultrasound – nothing was found abnormal on a follow-up contrast ct scan and two fibroscans
-high total and direct bilirubin on one blood test, have also had high ferritin, high IgA, low urea (twice since going vegetarian) slightly low creatinine which borderlines on normal
-low vitamin D, now taking supplements – been told it is because I don’t get a lot of sun which is true
-platelets are always borderline high/upper limit normal
-no abnormalities on CBCs
-high hb1ac and consistently fluctuating/high blood glucose
Possible assumptions:
- Hepatitis of some form?
- Lupus or similar autoimmune condition has been suggested?
- Gluten ataxia?
- Some form of vascular deficiency?
- ALS?
- Multiple Sclerosis?
- Vasovagal reaction?
-Diabetes?
-Parkinsons?
-Heart issues?
-Some form of psychological problem?
-Neurological condition/tumour?
-Some form of metabolic encephalopathy?
I have gone from doctor to doctor trying to self-diagnose myself, whereas I now realize this isn’t going to help me, or my doctors. So now, I’m simply going to state my history and my symptoms, and hope that someone can help me.
I've been diagnosed with various idiopathic diseases (conversion disorder, migraine syndrome, etc) because doctors just throw their hands up and prescribe various medications for my symptoms.
It started two years ago in the form of an 'attack' of sorts - suddenly felt dizzy, started trembling and felt like I was going to have a seizure. It dissipated afterward, but my balance/gait was fairly compromised afterward. "Waves" of dizziness swept over me for a week - my GP diagnosed an inner ear infection, and I started antibiotics and it went away - albeit very slowly. Over the past two years, it's gone from good to bad to worse to better to worse and I have no answers.
I first went after the brain, getting an MRI and seeing a neurologist - nothing significant was found. About six months ago I developed internal tremors as an additional symptom.
Earlier this year, I felt so crummy I ended up in the ER. They ran some tests, and cleared me to go home. Upon receiving a copy of the bloodwork I noticed that my direct and total bilirubin (as well as ALT/AST/GGT) were rather high. No jaundice or anything, but I did some research and saw that this is a sign of liver disease. I then saw that liver disease can affect balance and dizziness, so I went after testing that. I quit drinking completely (I drank because it helped my balance, in fact it completely negated 90% of my symptoms. I brought this up with several doctors, and they didn't know what to make of it.)
Well, three ultrasounds and five rounds of bloodwork later, nothing can be found wrong with my liver. A third one reported 'slightly coarse' texture but liver disease was ruled out based upon the rest of the report. I have also gotten two Fibroscans which both read back at 4.1 and 4.9 respectively - which I am led to believe would absolutely 100% rule out any cirrhosis. I'm aware biopsy is the 'gold standard' however to my knowledge a Fibroscan is almost preferrable in these scenarios. Either way, I have had two just to make sure the first one was not a false negative - from my understanding, this is as close to a conclusive test as I am going to get regarding my liver, and none of my doctors see 'grounds' for a biopsy. My mother can attest to this - I have been told by over 5 different medical professionals that I do not have liver disease. I am still suspicious, but I am at a loss at this end. I recently had a contrast CT scan which did not see anything with my liver, however found a 6mm cyst on my left kidney, and two 3mm ‘lesions’ on my right kidney – these were not seen in all three ultrasounds I had performed.
That brings this to now - I'm frustrated, I cannot work or function, and I am only 29 years old. Balance/slight motor function issues, waves of dizziness, lower back pain, pressure in my head (feels like cotton balls are up there) and constant anxiety. I also have horrible brain fog that seems to 'peak' around 3pm and get better around 5pm. Sometimes my chest feels tight, and my jaw hurts at times. Not sure if that is even relevant.
Recently, my hb1ac was at the ‘prediabetic’ end, and I have had high blood glucose in the past (one time was 9.5 and the upper limit of normal was 7)
Summary:
Medical History:
- Appendix taken out as child
- Root canal performed four years ago (same time frame early head pressure began) - this tooth is painful to brush to this day (again not sure if medically relevant) - considering having the tooth removed altogether
- Possible 'abscess' (?) on lower gumline - unsure how to proceed with this
- Intolerance to gluten (currently awaiting testing for celiac)
- Diagnosed with Meniere's Disease - however this is doubtful at this point, as many symptoms have since surpassed the limitations of this disease
- History of high ferritin and iron saturation - hemochromatosis - donating blood to treat this condition
Symptoms:
-Balance/gait issues
-waves of dizziness
-slight motor problems
-internal/resting tremor
-head pressure/cotton ball feeling
-really bad anxiety
-chest tightness
-altered levels of consciousness (derealization?) and memory problems
-sometimes my pupils dilate, around the same time I have ‘migraine auras’
-muscle twitching, sometimes involuntary
***** To be noted that any form of sedative - alcohol, benzodiazepines and marijuana – alleviates 90% of these symptoms.*****
Tests performed:
-CT scan of brain (normal) - non contrast
-MRI of brain (normal except for sinus polyps/cysts) - non contrast
-EKG (normal)
-Chest X-ray (normal)
-3 abd. ultrasounds (normal, save the third one, which reported a 'slight' coarseness on liver declared a 'subtle finding')
-6 rounds of bloodwork (high bilirubin, direct and total, once, ferritin usually higher end of normal(started at over double normal), IgA was high twice - tested negative for Lyme – tested for ammonia and it was low despite being a smoker) – since quitting drinking all liver function tests have come back perfect
-2 fibroscans ( 4.9 and 4.1 respectively - little to no fibrosis - normal)
-contrast CT scan (all organs normal except kidneys – lesions found in right kidney and a cyst in left kidney)
Total findings on tests:
-2 3mm lesions on right kidney, 6mm cyst on left – these are new, no previous scans have picked them up
-‘mildly coarse liver’ as a subtle finding on my third ultrasound – nothing was found abnormal on a follow-up contrast ct scan and two fibroscans
-high total and direct bilirubin on one blood test, have also had high ferritin, high IgA, low urea (twice since going vegetarian) slightly low creatinine which borderlines on normal
-low vitamin D, now taking supplements – been told it is because I don’t get a lot of sun which is true
-platelets are always borderline high/upper limit normal
-no abnormalities on CBCs
-high hb1ac and consistently fluctuating/high blood glucose
Possible assumptions:
- Hepatitis of some form?
- Lupus or similar autoimmune condition has been suggested?
- Gluten ataxia?
- Some form of vascular deficiency?
- ALS?
- Multiple Sclerosis?
- Vasovagal reaction?
-Diabetes?
-Parkinsons?
-Heart issues?
-Some form of psychological problem?
-Neurological condition/tumour?
-Some form of metabolic encephalopathy?
I have gone from doctor to doctor trying to self-diagnose myself, whereas I now realize this isn’t going to help me, or my doctors. So now, I’m simply going to state my history and my symptoms, and hope that someone can help me.
Brief Answer:
This is going to get complicated
Detailed Answer:
I'm no Dr. House but I'll try to help. let's start from the beginning.
1.most likely the original pmd diagnosis of an inner ear problem was correct if you had rotational vertigo with nausea and a normal MRI later. Mennieres disease causes hearing loss so if you had an audio gram showing that then the diagnosis is correct. the prolonged recovery is not unexpected in a non Mennieres ear problem as there can be recurrences and exacerbations but the general trend should be towards recovery. the other possibility is blood pressure fluctuations with changes in posture called orthostasis and there are many variations and causes.
2. I didn't get this information but the "feeling awful" and "internal tremors" sound like alcohol withdrawal if you became sweaty +\- diarrhea and goosebumps or ssri withdrawal if you abruptly stopped a medication. this also explains the treatment response to alcohol.
3.alcohol causes reversible damage to the liver. if you were drinking enough to get withdrawal it makes sense that your enzymes would go up but 1-2 years isn't long enough to develop long term changes such as cirrhosis until you are drinking extremely heavily. this explains the transient liver damage and the negative scans
4. you do not have ALS as you do not have any of the symptoms. ditto for multiple sclerosis if you have a normal MRI. same for lupus and hepatitis if you're labs are normal. if you can use this phone you don't have encephalopathy. ataxia would be noticeable to everyone and more doctors would be concerned and sending you to neurology. if your diabetes was uncontrolled you should check into this as a source of your concerns as it can cause nerve damage
hope this helps. let me know if all of this applies
This is going to get complicated
Detailed Answer:
I'm no Dr. House but I'll try to help. let's start from the beginning.
1.most likely the original pmd diagnosis of an inner ear problem was correct if you had rotational vertigo with nausea and a normal MRI later. Mennieres disease causes hearing loss so if you had an audio gram showing that then the diagnosis is correct. the prolonged recovery is not unexpected in a non Mennieres ear problem as there can be recurrences and exacerbations but the general trend should be towards recovery. the other possibility is blood pressure fluctuations with changes in posture called orthostasis and there are many variations and causes.
2. I didn't get this information but the "feeling awful" and "internal tremors" sound like alcohol withdrawal if you became sweaty +\- diarrhea and goosebumps or ssri withdrawal if you abruptly stopped a medication. this also explains the treatment response to alcohol.
3.alcohol causes reversible damage to the liver. if you were drinking enough to get withdrawal it makes sense that your enzymes would go up but 1-2 years isn't long enough to develop long term changes such as cirrhosis until you are drinking extremely heavily. this explains the transient liver damage and the negative scans
4. you do not have ALS as you do not have any of the symptoms. ditto for multiple sclerosis if you have a normal MRI. same for lupus and hepatitis if you're labs are normal. if you can use this phone you don't have encephalopathy. ataxia would be noticeable to everyone and more doctors would be concerned and sending you to neurology. if your diabetes was uncontrolled you should check into this as a source of your concerns as it can cause nerve damage
hope this helps. let me know if all of this applies
Above answer was peer-reviewed by :
Dr. Yogesh D
1. I gave up on inner ear issues when my motor skills were weakened. I had a brief period when I quit drinking that I could not use my hands that well, although this has dissipated in time. This is what led me to liver disease - hepatic encephalopathy. However, nothing can be found wrong with this organ, and I cannot secure a biopsy. Sometimes my muscles feel weak.
2. Alcohol withdrawal I can understand - however it's my understanding alcohol withdrawal lasts days. It has been five weeks in my sobriety, so far - I still have very many awful symptoms. My gait is off, my balance is very poor and I still have slight tremors from time to time. My memory is also very bad. I'm not sure if lingering damage from alcohol can still present after this long - assumed I should be in the clear by now.
3. I would understand if this were AST/ALT however my bilirubin was high - if I am not mistaken, once that elevates it is a sign of liver failure. However, I am not sure how I would have liver failure when my liver itself shows absolutely no sign of damage.
4. Looking into diabetes. However it doesn't explain all of this at all.
Okay so hrm, can you recommend any tests I should take, or treatment path I should go down?? I can't find a ton of doctors in my area who aren't dismissive of my condition, chalking it down to 'anxiety' or 'conversion disorder' - both absolute cop outs. I feel horrible, and am couch-ridden most days. I want a quality of life. Anything you can suggest based on the symptoms I listed, any tests or anything, perhaps a different approach with doctors, would be appreciated.
I paid for this so I could receive some kind of answer or at least a clue or two to point me in a direction for a diagnosis, so please anything you can suggest.
Thanks.
2. Alcohol withdrawal I can understand - however it's my understanding alcohol withdrawal lasts days. It has been five weeks in my sobriety, so far - I still have very many awful symptoms. My gait is off, my balance is very poor and I still have slight tremors from time to time. My memory is also very bad. I'm not sure if lingering damage from alcohol can still present after this long - assumed I should be in the clear by now.
3. I would understand if this were AST/ALT however my bilirubin was high - if I am not mistaken, once that elevates it is a sign of liver failure. However, I am not sure how I would have liver failure when my liver itself shows absolutely no sign of damage.
4. Looking into diabetes. However it doesn't explain all of this at all.
Okay so hrm, can you recommend any tests I should take, or treatment path I should go down?? I can't find a ton of doctors in my area who aren't dismissive of my condition, chalking it down to 'anxiety' or 'conversion disorder' - both absolute cop outs. I feel horrible, and am couch-ridden most days. I want a quality of life. Anything you can suggest based on the symptoms I listed, any tests or anything, perhaps a different approach with doctors, would be appreciated.
I paid for this so I could receive some kind of answer or at least a clue or two to point me in a direction for a diagnosis, so please anything you can suggest.
Thanks.
Brief Answer:
All good points
Detailed Answer:
Hi,
Increased bilirubin by itself is just a sign of gallbladder disease or anemia and can be seen in normal people and unlikely related to what's happening. If you continue to have difficulty walking, tremors, and balance I would re-check with a neurologist for a tremor and neuropathy evaluation. there are also muscle diseases that can cause these types of problems all of which an emg/nerve conduction can evaluate. Neurologists also specialize in tremor evaluation. as far as fatigue goes there are many different sources which might be related to your other problems or might be related directly to the other problem if you have nerve damage or weakness, might be related to the lack of activity caused by this problem, or something else such as poor sleep hygiene. If you're not getting the work-up you want you seek out a tertiary referral academic center. They usually have medical schools attached
to them.
Regards,
All good points
Detailed Answer:
Hi,
Increased bilirubin by itself is just a sign of gallbladder disease or anemia and can be seen in normal people and unlikely related to what's happening. If you continue to have difficulty walking, tremors, and balance I would re-check with a neurologist for a tremor and neuropathy evaluation. there are also muscle diseases that can cause these types of problems all of which an emg/nerve conduction can evaluate. Neurologists also specialize in tremor evaluation. as far as fatigue goes there are many different sources which might be related to your other problems or might be related directly to the other problem if you have nerve damage or weakness, might be related to the lack of activity caused by this problem, or something else such as poor sleep hygiene. If you're not getting the work-up you want you seek out a tertiary referral academic center. They usually have medical schools attached
to them.
Regards,
Above answer was peer-reviewed by :
Dr. Raju A.T
Answered by
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