Just some general questions?

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Kmars914

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So just a quick pre history on how I got here. Back in the summer of 2021 so roughly 5-6 months ago I went to a neurologist with persistent muscle twitching. During my first visit I took several blood tests which relieved extremely large levels of CPK in my blood. Upon receiving my results my neurologist recommended me to an ALS specialist at Columbia university here in NYC. Dr. Moto a renowned ALS specialist conducted a full physical exam as well as reviewed results from an EMG. The results of everything was that I would be diagnosed with BFS and sent on my way. I’m not here to argue a 30+ year ALS specialists diagnoses and or opinion it isn’t my place. However I did have some questions for the community about certain symptoms that have persisted as well as some so called “facts” that I had been told along my journey.

My first question is regarding something I heard from my first neurologist. During my first visit I told him about my persistent twitches. He told me if you can feel it then it is not related to ALS as patients with ALS cannot feel the twitching. Is this a real fact or something that may just be common and not 100%?

My second question is when I had my EMG done it was conducted entirely on my right side of my body. Yet all my symptoms were located in my left side of my body both in my left hand and my left foot. The sensations I have had are constant twitching and at what I can best describe as “vibrating” in my left hand and foot constantly 365. Are als type twitching persistent in this manner? And is there any description of someone having “vibrating” type sensations?

My 3rd and final question is, I have looked high and low for BFS related forums, nuero logical forums, etc etc. i feel like a selfish person asking those living or having being affected by ALS to take time to answer my questions. Is there any good references?

I appreciate your time and energy thank you very much
 

ShiftKicker

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Hi there- past thread here for folks to see what has been discussed before:


To answer your third question, there is an active subreddit for those with muscle twitching. Just look up "muscle twitch" there. There are also online forums for health anxiety, such as No More Panic, with sections dedicated to peer support for the very common fears that seem to come up with muscle twitching. FB also has a very active BFS group- easily searchable as BFS Recovery- which provides a lot of support for folks who twitch, but does not allow repeated posts about ALS, which is very helpful for those who wish to focus on coping with symptoms they find distressing but don't want the conversation to be constantly steered towards a disease they do not have.
 

lgelb

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Q1: I think he meant that annoying twitching is common and means nothing without functional impairment.

Q2: It is quite common to EMG muscles that are not current issues, since the hallmark of ALS is certain abnormalities in muscles that are not of the most concern.

Best,
Laurie
 

affected

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Please don't waste any more of your life pursuing fears on this, you have been given very good advice.
 
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