seriously cant take it anymore!!!

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seriously cant take it anymore!!!

Postby will97 on January 22nd, 2014, 9:57 pm

For those of who have read and/or commented on my previous post viewtopic.php?f=3&t=20055 ... I have to say that I am not doing better. I have had these constant twitches 24/7 for the last 3 weeks ... I still feel them but they have calmed down. Yesterday I still had these twitches and I also had the whole day of elbow muscle twitching for the entire day!!! However, today they are gone and have traded for the right outside thigh muscle ... this one is a new weird one It hurts as hell when it twitches and they also twitch when I am standing ... is that normal?

Last week I also got a call from my neuro clinic telling me that my neuro moved to the USA and that she is opening her own business !!! It bums me out, she was really good (Angela Genge) and now I have no neuro and will get a new one and need to start over :( on top of that, my 6 month follow-up EMG was moved back to April 15, 2014 and I feel like I really would need some reassurance :oops:

I feel like my thighs are getting weak ... then again is it all in my head? I have been doing some house-tests to see if I was loosing strength and getting weaker ... I am able to do at least 10 lunges with my own weight used, I am able to walk on my toes and heels with both feet but it hurts a little and I am able to stand up straight on one foot while I was sitting down.It hurts as hell as well, my thigh is soooo sore!!! I think I dont have weakness right?

Can't wait for this to blow over as I am getting afraid of it being something else than bfs :(
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Re: seriously cant take it anymore!!!

Postby will97 on January 23rd, 2014, 9:09 am

Any thoughts guys? Do you think this is normal BFS and have you guys had phases like the one that I am going through?

Popping of the muscles, non-stop twitching ... sometime ssimultaneous muscles and other times it goes n for days, stops and moves to another muscle, vibrabitin & buzzing sensation in the hands and feet ...

Thanks for reading and for responding!!! :)
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Re: seriously cant take it anymore!!!

Postby bobajojo on January 23rd, 2014, 9:40 am

Will,

Please relax. Everything you describe is classic, classic BFS. Both my elbows have been twitching for nearly 20 months straight, all day everyday. The outside of my right thigh acts up very frequently, even when standing. Its been doing this for nearly 3 years now. Simultaneous twitching? Absolutely. I sometimes have 5 or 6 areas popping away at one time, and that's not including my feet, calves, and elbows which never stop.

Lastly, you said the words that separates BFS from something more sinister... "I feel like". With bad neuromuscular diseases, the patients say "I can't..". BFSers say "It feels like". My neuro told me that one.

Hang in there. Twitching sucks, but its only twitching. Not gonna hurt you.

-Matt
Over 10 billion twitches since May 2011.
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Re: seriously cant take it anymore!!!

Postby johnnythejet on January 23rd, 2014, 9:54 am

Listen to Matt.

Every moment you spend thinking about whether your symptoms are "being something else than bfs" is completely worthless, harmful and a waste of life. We know without any doubt that a case like yours will never ever ever....EVER become something sinister like ALS, etc. I understand you're sad and depressed because your neuro left and the EMG date moved back, but that doesn't change the facts. The fact is that your EMG date is meaningless, because it really isn't necessary based on what we know. The idea that you are somehow still waiting to see if something sinister will come of this is an illusion.....nothing more.
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Re: seriously cant take it anymore!!!

Postby will97 on January 23rd, 2014, 10:42 am

Matt & Johny,

Thanks guys for your responses ... straight to the point, just the way that I like and need it.

I guess that even after about 20 months of twitching the thought of something more sinister still lays in the back of my mind and thats not cool, but I cant seem to get rid of that. Its as if my fears always come creeping back when my twitches are somehow different and persist for a long period of time ...

I know that there is worse than BFS ... but I still have to say that I really hate this condition as I am sure that all of you do!!! However, if it is BFS and only BFS I will continue to try and live with it as I really dont want it to turn to anything worse.

Thanks guys for sharing your thoughts.

Will
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Re: seriously cant take it anymore!!!

Postby shell67 on January 23rd, 2014, 12:49 pm

Will -- I've had every symptom you describe. Read through some of the vets' posts -- folks like GHayes -- people who went through major anxiety over their symptoms and are now in a good place. It really helps.

Matt -- I've had the elbow twitch for about seven months. Do you get weird sensations in the area that's twitching? My left arm always *feels" weak and/or a bit numb, sort of the sensation you get after you have your blood pressure taken. Once I realized my arm was not getting weaker, it just felt weird, I calmed down, but it's still very odd.

Thanks,
Michele
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Re: seriously cant take it anymore!!!

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