Tremor and Fasciculation - My Experience

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nickcolorado13

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Thank you for this community and I just want to say I'm sorry if this post goes against the intended use. I have symptoms that led me to this forum and I was worried about ALS and went through the process. This forum has been such a refreshing source of reality. When everything on Google tells you that you probably have ALS, it was so comforting to see people tell posters, that "no, you probably do not have ALS." To those with health anxiety, your time and helpfulness mean a lot. And I wanted to add my symptoms and my neurologist's information / EMG in case someone stumbles across this thread after Googling similar symptoms.

I am 37/M. One day in Starbucks I noticed my ring and pinky finger on my left hand seemed off when typing. Not really weakness, but not normal. I then noticed a small resting tremor in my left hand. It was not in my right hand which caused concern as stress, anxiety, caffeine etc., typically would afflict both sides. About two weeks later the fasciculations began. All over my body and everywhere.

Googling "fasciculations all over body" brings you right to ALS. The entire left side of my body felt like it was shaking and pulsing. Not noticeable at the surface but felt deep within. Fasciculations were noticeable. My lips twitched a lot and I felt like I was having trouble speaking exactly as normal. I was having trouble whistling, which I can normally do just fine.

My PCP referred me to a neurologist who tested me and looked specifically at the tremor. He thought it was nothing serious however because he didn't specialize in MN diseases, he referred me to another neurologist who did for the fasciculations and to rule out anything serious. She observed me, tested me, scheduled blood work and scheduled an EMG 3 weeks later. Well, the blood work showed a Vitamin D deficiency and pretty low b12. (It's odd it took me to this point for someone to schedule blood work) I started taking supplements, got outside in the sun a lot, and received 2 B12 shots. About 5 days before the EMG, and 10 weeks after it all started, the fasciculations and tremor started to slow down some. My neurologist performed the EMG on my leg and arm/hand. She said that my EMG was clean although she said she saw two faciculations in my calves which is a more common area.

She said plainly there is no reason to suspect ALS, given the clinal exam and EMG. She said that ALS rarely, rarely starts with fasciculations. It's really disappointing that so much on Google leads you to believe otherwise. She also said that the longer time goes by of only having fasciculations, the less likely it is to be ALS. She mentioned that even 6 weeks is approaching a good time. I also asked her if the vitamin deficiency could be the cause of the issue but she said it probably wasn't, which seems contradictory to other information I have read. I believe that has been my problem as symptoms have improved in about the third week of treating those deficiencies. She suspects BFS, although wouldn't make a diagnosis. She mentioned how neurology is about combining multiple observations over time and there are not exactly tests to definitively make these diagnoses.

One last thing I would add is that my anxiety caused me to study my fingers constantly as it started there. Testing the strength in my fingers and moving them in ways they probably hadn't moved in years. Noticing how they varied from side to side, how dependent or not dependent they were on other fingers to move or do things. I've seen other posts about this as well. I did this almost to the point of causing joint and tendon pain from overuse. My neurologist mentioned how our hands and tendons and muscles are not always symmetrical from side to side in the hands and it's not something to fixate on.

At this point, I'm pretty certain I do not have ALS, and hope my symptoms continue to improve. The reality is that when you Google my symptoms, many results for ALS come up and you end up on this website. It's been helpful in many ways. Thank you all for this resource and your commitment.
 
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Thank you for reporting in, and the kind words, Nick.

It is fairly common to be deficient in vitamins B12 and/or D. Diet, outdoor pursuits, the weather and so much more, such as other vitamins you may take, can play a role. Vegans and many vegetarians/pescatarians should generally supplement B12, with methylcobalamin the recommended form of B12 and D3 (for which there are now plant-based versions) the preferred D.

Sleep and hydration frequently play a role in perceived facial weakness in things like whistling.

Glad to hear you find yourself able to move on and enjoy life -- all the best.

Best,
Laurie
 
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