14 months update

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14 months update

Postby Andreas on October 16th, 2014, 7:40 am

hi everyone,

I think it is now time for an update.
As you know I am twitching since the beginning of september last year.

Some of my symptomse are getting worse, some are better than before. But one thing that exists allready is the changing of my symtoms near every day.
I am now at a point which I can coop with my symptoms. I am mental stable at the moment but I have also very bad days.

My most effective cure was the try of a mild sort of low dosage beta-blockers (bisoprolol)! That was suggested by my neuro and worked good for me. My tremors are now very low (near completely gone) but the twitching stays at it was before. For me the tremor improvement is a good success and hase improved my mental state quit well.

But there is one thing now that makes me a bit worry. It was never possible to provoke twitches by tapping my muscles. But now, I can provoke them on many muscles of my body. This is a new Situation for me and makes me feeling sad.

I know that after 14 months of Initial twitching the chance for MND is quit low but every new symptoms or every change of symtoms brings me back in alert-mode.

Has everyone else the same experience with the possibility to provoke their twitches by tapping muscles after many months of twitching?
I said myself that I won´t need a new EMG but now I am not sure that the last one im december last year (3 months after Initial twitching, totaly clear) was enough....

By the way: I suggest everyone with tremors to test the betablockers. I never read about a possitive effect of that for Tremors, but my neuro said she has positive feedback with that at a very low dosage and I should give it a try. And she was so right with that!

regards,

Andreas
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Re: 14 months update

Postby MarioMangler on October 16th, 2014, 10:20 am

Muscles that twitch when you tap on them are not only common in BFS, I bet it happens a lot to people even without BFS. It's a very easy way to get a muscle to twitch.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: 14 months update

Postby emmie.s on October 16th, 2014, 2:15 pm

Andreas wrote:Has everyone else the same experience with the possibility to provoke their twitches by tapping muscles after many months of twitching?
Andreas


Yes, I can. Especially the ones on my hands. No worries.
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Re: 14 months update

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