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New member
May 1, 2006
I am Andy and I am really worried about ALS. Since almost 2 years I have random twitches, muscle pain and cramps. There is no weakness or athrophy. I went to my Neuro 7 times and i was 2 times in the hospital. I got about 6 clean EMGs, physical exams, blood work, etc. I got told from all 3 different Neuros that my condition is BFS and not ALS. Do you think after almost two years i would have more severe symptoms?
I would say you are doing wonderful and should kiss the ground every day when you get up.Thanks for the BFS link Tracy. AL.
long term twitchers

I still get random twitches all over and some almost cramps and crampy feelings mainly in my legs. As I wrote before I already got a couple of clean EMGs and exams and the diagnosed is BFS. What really worries me are some stories here and on ALSTDF of ALS patients reporting twitches for 10 or even 15 years before other symptoms or diagnosed. How am I supposed to know if my twitches are really bening if it can take 10 years or more for other symptoms to show up? This is what really scares me! On the other hand, even if I am not a doc, I wonder how on earth it could be possible to have (ALS) twitches for ten years without weakness,athrophy, etc. ?! Maybe the twitches are not related to ALS in these cases and it is just a coincidence.....
I would really appreciate your comments!
Thanks and bless you all!

ALS is not curable, so every day we are told we don't have it is a good day. No sense being in a rush to find out that you have ALS. The way I figure it, our symptoms could get a LOT worse so I've decided to get used to them and get on with life. Most days it works for me. Cindy
cindy I agree. I try not to think about it Imay have als but als doesnt have me yet! If I were you andy I would enjoy my Dx and not think about something that you dont have and if in the future it gets worst address it then For now dont even think about it .Pat

Your clean. Please refer to the Mayo clinic's BFS research project. for people with BFS (muscle twitches) more than two years, there are like 250 peolpe in the test, 100% of them never went on to develope ALS!

You've had 6 EMG's, 3 Neuros, your clean buddy! Like AL said, kiss the ground each morning, this has definitely been an experience that will make you live the rest of your life differentely.

From personal experience and a ton of research, it takes about 3 months of muscle twitching, when you start noticing (weakness or atrohpy). If the twitching is due to ALS, it's dying muscle or dead muscle, that is looking for a "nerve" it no longer has, hence, it's only a short matter of time, before the muscle starts shrinking.

Live your life buddy, come back when you want, we'll be here to answer your questions.


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