Prince Concert Ruins Night: Twitching 24/7

[StephG22]

Well, I went to see Prince in concert last night. I was so close I could feel the sound hit me with every beat. I can hardly hear. Yet through it all, I still could feel constant calf, foot & thigh twitches even while standing. It ruined my night. I am so depressed and fearful (of you know what) & miserable. I wake up feeling bad like this. I twitch at least 10 times a minute 24/7. Could someone pleeeeeeeease knock some sense into me with facts I can hold onto? I just seem to need constant reassurance & this is the only place where people know what I am going through.
I have had 3 normal neuro check ups - except for brisk reflexes, 1 1/2 normal EMG's ( The 1st EMG showed slow conduction of nerves in hands. They were cold. the 2nd EMG showed the left calf had 1/2 the amp as rt leg), no weakness, atrophy diff swallowing etc except sometimes I think I do), I am a 37 yo fem. Also there is suspicion of demyelination on my brain MRI. blood Lyme neg--still have to do spinal. I had Lyme twice 15 yrs ago. Thanks for any help!
PS I know I sound like a nut-job but please bear with me!

 

[garymills]

StephG22,

Hang in there, you are going to be ok. Based on your two emg's and normal neuro exams, I believe you can rule out als. And I bet that your neuros are confident that you don't have it. What have they said about your tests?

As for your twitching constantly, I've had that for over a year now. The best advice I can give is to not focus on it. I know how hard that can be, but you have to try. I think a good way to do it is to start with 30 minutes that you make a conscious decision to ignore your sxs. Do whatever it takes for 30 minutes, but don't look at or acknowledge you twitches. Try that for a few days, then lengthen the time.

Good luck,

Gary

 

[holisticdriver]

Wow stepahnie from the sounds of your post, you really are going through quite a hard time right now.

I can only really mirror what Garym has said, with the way you describe your symptoms and the fact you have had clear EMG's I would say that rules ALS out of the picture. With possible defects on your MRI scan such as demyelination is MS a possibility?? Then we have this problem of being infected with Lyme twice?? or would you affected once and it came back?? Perhaps what you are suffering from now could be due to damage from the Lyme?

Other than that all I could say is that its a possibility you have BFS...its obvious you have some neurological history, so my inital thought was that your neurological symptoms could have some connection with your past...other than that then id have to say at this time BFS...however if it is BFS, bare this in mind...your anxiety is gonna make your BFS symptoms worse, which in turn will make you more anxious which will then icnrease your symptoms even more..and that cycle can go on and on forever, so try and get a bit of control on the situation.

 

[StephG22]

Thanks you guys--good advice that I will try to follow!
My brother has MS. I'm not scared of that. It's a possibility. I had lyme 2 different times, both w/ a bullseye rash so that's also a real possibility-I just need to do a spinal. I need an answer so I can stop worrying about dying.
S