BFS Diagnosed: Relief and Gratitude

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sarahwithaH

Member
Hey all!

First, thanks to everyone, especially Brian who has been so supportive. I had my second EMG and NCV today, one year after the first which was clean. Today's EMG was clean too and I got the official BFS diagnosis. Fascicualtions did show up on EMG, though not as many as I thought I was experiencing. No loss of strength at all. While I had suspected the BFS dx, it was a huge relief as you can all imagine.

Turns out my neuro has BFS too. What a kicker!

My neuro seems to think BFS has a big hereditary connection but since ALS has been in the news in recent years (and wasn't when our parents were younger), people who twitched didn't freak out like they do now. They just twitched.

He confirmed that almost always people with ALS have twitching WITH weakness and it is obvious. He also noted that NOTICING your twitches is almost always BFS. Apparently, ALS twitches are often more subtle and go unnoticed until weakness is present. Buzzing, hot spots, tingling, numbness, jolts, tremors and the like-----------ALL BFS without weakness. Of course, we all know these can be symptoms of other stuff, but definitely all included in BFS.

I asked if this constant twitching can lead to muscle or nerve damage and the answer was "no." I asked about a follow up and the answer was "no."

Hope this is helpful.

Thanks again for being there.

Lisa
 
why did you get another EMG? I had an EMG after about 6 months twitching and it was normal(normal as in not als) and he told me that he only would do another EMG if got any worse symptoms(weakness ect.)
 
I guess because the first one which was a year ago was pretty early in the twitching. Also, twitching got worse lately and I complained to my PCP who happens to be the PCP also for my uncle who died of ALS. I think he knows I worry about ALS and was nice enough to schedule a follow up EMG to put my mind at ease. I do think the neuro was wondering why I was there again. At least this time he said "BFS" which he did not do last year.
I won't be getting any more EMG's. First of all they hurt. Secondly, you are right. No need unless symptoms are accompanied by weakness.
I have to say I am glad I went for peace of mind's sake. The neuro told me one clean EMG is all you need at any time.
By the way, thanks for all your support Brian.
Lisa
 
you welcome Lisa....now comes the next part which can be hard to do as well, and that is to realize that you may twitch for a number of years or you may always twitch, but to accept that while you may twitch it wont hurt or kill you.
 
Hey thanks everyone!
Yep, you are right Brian. It is harder not to worry than it is to worry for some reason. You would think when you get the BFS dx after a year and have no weakness, the twitching would slow down a bit simply from a HUGE stressor removed. BUT NOOOoooooooooooo. Would you believe I am twitching more today than I was two days ago? How's that for moving on to bigger and better things?! Go figure.
Oh well. I just watched the news and I am in pretty good shape considering some of the poor souls out there.
Cheers to benign twitches!
 
Lisa,

Thank you so much for sharing your results. It's posts like these that keep us all reassured that this condition we share is not "serious." I've been a long time member here (have read a lot, but have not posted much) and it's posts like this that bring us all back to reality. And we definitely need to be brought back from time to time :) It''s interesting that your twitching has increased recently. I for one am twitching more now than when this all started 18 months ago. Like you said, "Go Figure."

Kind regards to all...

Bob
 

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