What Does This EMG Report Indicate?
Back on January 3rd i had many symptoms like weakness,twitching,trembling etc,. I googled my symptoms and ALS came up in the search. I am from new Orleans and one of our football players from Saints was diagnosed with ALS so i knew somewhat what the disease can do.
So i went to a Neurologist and she did the Clinical and said i am fine. For me peace of mind she order an EMG of both arms and legs. EMG was performed by Dr:mohnat(over 40 years of experience). He told me i was totally fine and there is no spontaneous Activity.
I was very happy to hear that but than i did what anyone with high Anxiety/stress/OCD would do and went to ALS forums and i became aware of Bulbar ALS. I knew dr.Mohnat didn't test my bulbar region so my mind started racing. I called him and he said we can Diagnose Bulbar by looking for signs in Bulbar region on a Physical Exam. He said i was fine so this was in mid january. I started going to many different Neurologist and became obsessed with ALS/Bulbar. Evertyone looked over my reports and did their own physical and said i was fine. I have no clinical weakness, no atrophy and no hyper muscles(thank god)
I went o pakistan in April and saw a Neurologist there. well i actually saw few different ones and all said i was fine. I found one who said let's do another EMG. He did one and he told me i have ALS/Bulbar in both upper body and lower body at the same time. I asked him that als and bulbar can't start at the same time and he was confused by my questions. I also said there is no spontaneous activity on my emg and he was again confused.
So i sent in my 2nd emg reports to dr.mohnat and he said that my reports haven't changed. He said both my emg's one done in january and the other in mid may show no spontaneous activity. he was baffled that a neurologist can diagnose me based off the 2nd emg and he was even more shocked to find out the neurologist in pakistan who did the emg performed no clinical physical exam.
In between the EMG's i had so much bloodwork done and everything came back normal.
so that brings us to today. By now i have seen 10 plus Neurologist and have gotten atleast 15-20 Clinical exams and everything has been fine(Thank GOD)
I came back to USA on september 7th and since than have seen 2 more neurologist and both said i am fine and looked over both of my EMG's.
here are some questions, please tell me if these are true and if you can provide your input:
1-I was told that with als/bulbar patients doctors see spontaneous activity when they insert the needle and both my EMG's show none
2-i was told that the amount of doctors i have seen combined over 250 years of experience that not everyone would miss clear signs of als/bulbar patients
3-I started doing self testing. checking my strength, looking for jaw jerk when i hit it with my phone and the biggest, looking at my tongue in a mirror all day long every 15-20 minutes. So i started to see my tongue move,twitch,tremble while at resting position inside my mouth. This scared me really badly because from my research it said that the tongue moves around in the mouth and twitches even while at resting
do you think because i am so hyper aware and always looking at my tongue that my tongue is doing twitches/trembles because of the stress i have put on tongue muscles? a friend of mine showed me his tongue and even his tongue was moving around at resting. So i am confused and kind of scared
This all started on January 3rd and today is October 10th. Do you think if i had something that it would have progressed by now
also could so many doctors miss clear signs/symptoms
My tongue moving at resting has really scared me. Also when Neurologist look at tongue do they look at tongue on top side or the bottom side? My top side is a little better but when i fold my tongue or the bottom side is all moving/trembling etc,
Please help. My first EMG was normal and this is my 2nd emg done in pakistan
EMG STUDY:
1. right tibialis anterior-no spontaneous activity:
moderate-marked reduction of recruitment patterns with motor units of high amplitude up to 4.16 mv, recruited at normal firing rate
2.left gastrocnemius-no spontaneous activity:
moderate-marked reduction of recruitment patterns with motor units of high amplitude up to 3.2 mv, recruited at normal firing rate
3. right rectus femoris-no spontaneous activity:
moderate-marked reduction of recruitment patterns with motor units of high amplitude up to 6.26 mv, recruited at normal firing rate
4.right biceps-no spontaneous activity:
moderate-marked reduction of recruitment patterns with motor units of high amplitude up to 3.06 mv, recruited at normal firing rate
5.right thoracic para spinal-no spontaneous activity:
moderate-marked reduction of recruitment patterns with motor units of high amplitude& normal duration, recruited at normal firing rate
6.right ganioglossus-no spontaneous activity:
moderate-marked reduction of recruitment patterns with motor units of high amplitude up to 4.3 mv, recruited at normal firing rate
REPORT:
NEEDLE EXAMINATION REVEALS REDUCED RECRUITMENT PATTERN IN THE TESTED MUSCLES OF LIMBS, THORACIC PARA SPINAL&GENIOGLOSSUS MUSCLES
comments:
THE ELECTROPHYSIOLOGICAL STUDY IS SUGGESTIVE OF ANTERIOR HORN CELL DISEASE.
Thank you
I have had these tests:
Barium swallow test-normal
EGD and ent scope study Normal
one EMG in january normal
One emg in mid may done in Pakistan by not someone certified
Vita min B12 levels little low(took Medication)
Vitamin D levels little low(took medication)
HIV test negative
Herpes type 1-2 negative
Hepatitis C negative
atleast 15-20 Clinical Exams by Neurologists all normal
seen 10 plus Neurologists with combined 250-300 plus years of experience
asked if i should get a 3rd EMG and was told not needed
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was told that:
There is no spontaneous activity . . . meaning . . . there was no denervation found or fasiculations. ALS is a denervating disease. This means that your EMG is not the EMG of someone with ALS.
Was told that with seeing so many doctors not all of them could miss major signs of als or bulbar
clinical exam showed NO:
Clinical weakness
atrophy
hyperreflexia
no jaw jerk
i was told that all this started in january and now is october so in 10 months this nasty disease would have progressed to a point where i wouldn't be able to talk,laugh,eat etc, if i had bulbar
i would not be able to run 2 miles, play cricket, be able to open a door knob, tie my shirt buttons etc,
i HAVE BEEN TOLD OVER AND OVER THAT no spontaneous activity means no ALS/Bulbar. I was told that my january reports had none and my mid may reports had none. so it has stayed the same for both my EMG's
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my questions:
My tongue moves,trembles,twitches when at resting place inside my mouth. Could this be due to the fact i have been self testing myself. Putting my tongue under a lot of stress. My dad showed me his tongue and his was also moving,trembling etc, inside his mouth. Is that a normal thing?
would something like Bulbar affect whole tongue or one side? my left side of tongue feels bruised and sore. But than again i have been told that ALS/BULBAR IS NOT A FEELING DISEASE. FEELING IS SENSORY AND ALS IS MND
I asked if i should get a 3rd emg and i was told no because not needed.
I have been told that Clinical exams would show abnormal activity before my emg
unlikely to be bulbar onset amyotrophic lateral sclerosis
Detailed Answer:
Hello XXXX,
I have gone through your question , reports and earlier consultations with neurologist and understand your concerns.
Diagnosis of Bulbar onset ALS requires symptoms like dysarthria, dysphagia with signs like fasciculation , tongue atrophy and objective testing of dysphagia. These clinical parameters are supported by lab investigations like ruling out any local cause and EMG for electrophysiological support.
In your case please describe the symptoms you are facing.
As per your description , possibility of bulbar ALS is unlikely. In absence of any weak XXXXXXX , wasting, fasciculation the diagnosis is not ALS.
If you have significant dysphagia or dysarthria then you should be evaluated for other neuromuscular diseases.
Tongue is a structure made of only muscle and no bony support so the muscles are moving once you try to open or move tongue. Stress may also lead to tongue movement.
As a neurologist we are interested in tone of tongue(felt on palpation), wasting or visible fasciculations at rest. Some degree of twitching without wasting or any other sign carries no importance.
Are you having fasciculation over any other part of body?
I hope you have been investigated more than required and doesn't need further evaluation.
Just calm yourself and change your focus from the ALS.
You can take anxiolytics for some time.
Do get back for further queries.
Regards
Dr Neeraj Kumar
Neurologist
because of my self testing sometimes i feel like my right arm and leg are weak. it's because i put pressure and try to check strength.
The thing that scared me the most was that my tongue was moving,trembling,twitching at rest. I would stand for few minutes infront of my mirror and just look at my tongue. It became my main focus point even while driving
i pay close attention to when i talk to see how my tongue is moving and sometimes i would tell myself that it's moving really quickly when i talk.
The doctors who have checked me have said i don't have any neurological disease. This last neurologist i saw has over 40 years of experience and he basically called my reports from Pakistan wrong. He said there is no weakness,no atrophy or hyper muscles.
he said in 10 months this disease if i had it would have progressed badly and by now i wouldn't be able to live my normal life
he basically said this is all happening because i am self testing
i am filled with the what if's
the bad thoughts about dying and leaving my family behind
always thinking 24/7 of this disease
he said when we focus on something and think about it all the time than our body will manifest actual physical symptoms that can look very similar to whatever disease i am thinking about
he said if a person like me who has health anxiety reads about brain tumor than i will start having those symptoms. I asked him should i get an emg and he said not needed
so in your honest opinion this has nothing to do with ALS/Bulbar? and in bulbar the whole tongue is affected and not just one side
my neurologist also said that patients with bulbar don't feel anything early on. it's not a feeling disease. he said it's about failing and not feeling
Thank you so much for your help. Believe me you have put my mind at ease a bit. I was actually gonna go see a neurologist on monday but i think if i keep going to doctors and this cycle of bad thoughts won't end
Thank you again
oh and yes when i am stressed i get twitches all over the body.
Consult a psychiatrist or psychologist
Detailed Answer:
Hello XXXX,
You are having manifestations of stress. Another entity with fasciculations is called benign fasciculation syndrome with no wasting or weakness.
I will suggest you to get a psychiatrist or psychologist opinion after your neurologist opinion on monday who will help you tide over this vicious cycle of stress with psychotherapy and some anxiolytics is required.
Yes , its true that ALS is rapidly progressive disease in majority.
I hope you have been tested for routine blood parameters including thyroid profile.
Any abnormalities in blood report needs to be treated and deficiencies supplemented like vitamin B12 and vitamin D.
You can also try alternative medications like yoga and meditation.
Hope you found the answer helpful.
Regards
Dr Neeraj Kumar
Neurologist
plus i am 31 years old so at my age group it's even more rare
Thank you for all your help
also bulbar would affect whole tongue not just one side right?
Thank you and i already saw a psychiatrist and she gave me anxiety/depression medicine
Thank you
Continue medications advised by psychiatrist
Detailed Answer:
Hello dear,
Yes, its less likely to get bulbar onset ALS in your age group.
Wasting in tongue may be unilateral initially but is a diffuse process and leads to atrophy of whole tongue. Also the tongue becomes spastic with difficulty in tongue movement , protrusion and speech.
You follow the medications prescribed by psychiatrist for some time and stop thinking about this.
God bless you. Hope you recover soon.
Regards
Dr Neeraj XXXXXXX
Neurologist
unilateral initially this word has kind of scared me that since my left side of tongue has been bothering me?
would someone with bulbar or onset of bulbar feel anything like a bruise on left side, sore etc,?
i am sorry about asking so many questions. In your opinion is it a good idea to see my Neurologist on monday just to make sure everything is looking fine on the tongue?
I feel like i have self tested myself tongue wise so much that my tongue feels bruised.
on wednesday my Neurologist checked me and he tested my tongue
he asked me to bring it out of the mouth
whistle
move it around
push it against my cheeks and teeth
while he also look on bottom side of tongue too
he said everything looks fine. so from wednsay to sunday is 4 days. you don't think in 4 days something drastic would change
Nothing to worry, visit your neurologist
Detailed Answer:
Hello dear,
For neurologist the upper side of tongue is important as twitching is seen over the surface at rest. Undersurface of tongue contains vein and more fibrous tissue and can not be examined at rest.
Physical presence of wasting is important, only abnormal sensation will not be helpful for diagnosis.
You can upload video/ images of you tongue in resting position for review to me.
You should get the consultation of neurologist on monday but enquire all your queries in written form.
Progression in 4 days is not possible so do not worry.
Do get back with photo/video for further query. You can also upload your previous investigations, prescriptions and consultations.
Regards
Dr Neeraj Kumar
hello i just uploaded some picture. I want to upload a video but my video us MP4 and it's not letting me add it
https://youtu.be/3zh0HWzYn5w
https://youtu.be/kunaR_4wIsY
https://youtu.be/aXzMbFJLhOM
https://youtu.be/SnuNTFSy60A
https://youtu.be/DlqzHxs4QRs
https://youtu.be/4eXmPKro60o
https://youtu.be/YeDKfGdeuwk
https://youtu.be/BiaDZeg2PBU
https://youtu.be/hal12XK6j8s
Nothing abnormal, be assured
Detailed Answer:
Hello XXXX,
I have gone through all your images.
There is no tongue atrophy, symmetrically it's fine.
Tongue protrusion and movements are also not restricted.
No significant furrowing over tongue.
Nothing to worry.
RELAX RELAX.
Regards
Dr Neeraj Kumar
Neurologist
also only my left side of my tongue has been bothering me that's why i uploaded the videos for you to be able to see
https://youtu.be/3zh0HWzYn5w
https://youtu.be/kunaR_4wIsY
https://youtu.be/aXzMbFJLhOM
https://youtu.be/SnuNTFSy60A
https://youtu.be/DlqzHxs4QRs
https://youtu.be/4eXmPKro60o
https://youtu.be/YeDKfGdeuwk
https://youtu.be/BiaDZeg2PBU
https://youtu.be/hal12XK6j8s
https://www.youtube.com/watch?v=hal12XK6j8s
https://www.youtube.com/watch?v=3zh0HWzYn5w
https://www.youtube.com/watch?v=kunaR_4wIsY
https://www.youtube.com/watch?v=aXzMbFJLhOM
https://www.youtube.com/watch?v=SnuNTFSy60A
https://www.youtube.com/watch?v=DlqzHxs4QRs
https://www.youtube.com/watch?v=4eXmPKro60o
https://www.youtube.com/watch?v=YeDKfGdeuwk
https://www.youtube.com/watch?v=BiaDZeg2PBU
Go through the video link provided
Detailed Answer:
Hello dear,
I have gone through all your videos on you tube.
Though you have some transient movement of tongue but it's amplitude is large.
You have no wasting of tongue or rough surface.
You can visit the link below for a pathological tongue fasciculations.
Regards
Dr Neeraj Kumar
Neurologist
Brief Answer:
No worries for now
Detailed Answer:
Hello,
At this moment no hard neurological signs of bulbar Als present.
Presently stress should be reduced, try taking some anti-anxiety drugs for some time.
Consult a neurologist only when you get some new problem or signs.
Regards
Dr Neeraj Kumar
Neurologist
ok thank you. i am a very anxious person
when you say for now do you mean or are you saying that this could change? the tongue movement that's in the videos is that due to stress and anxiety?
i am really worried now
Relieve your stress
Detailed Answer:
Hello,
Yes the present tongue movement doesn't seems to be pathological and may be stress related.
Diseases are having dynamic progression some slow some fast. Thedifferential diagnosis keep changing with time and additional presentation.
For now no pathological finding present and your symptoms can be best explained by stress.
Regards
Dr Neeraj Kumar
Neurologist