Finding Hope with Support

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KrackerjacksyBeel

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Lovely - I think that most of us have felt as you do that you can't hang on. It does not seem silly in the least. You found this site sooner than I did - so use it. All the people who have been here for a while are still here. Read and re-read these positive messages. You will be able to believe them if you let yourself. I know, because I've been where you are. I've been twitching for over a year and finally feel relaxed - still twitching - but relaxed. There is so much valuable information here - just keep reading....and breathe!
 
I twitch everywhere. All four of my extremities fasiculate. I also cramp. I have these pinching-like pains everywhere. I am so scared right now. I am crying as I write this.
 
Dee Dee,

If you have had 2 clean EMG's then you don't have *** PERIOD. Many folks here cramp....I do and I have been twitching away now for over 16 months. Try taking 400 IU of "NATURAL" vitamin E every day. I read about a Dr. perscribing this for some patients that were having night cramps. I started this about 2 weeeks ago and it has helped greatly.

As far as a muscle biopsy....I think your GP is WAY out of line. Let the neuro decide whether or not you need it. And it is amazing to me as to how many GP's have not heard of BFS. I have a good friend 4 years out of residencey that did not have a clue regarding BFS.

I had two EMG's that were perscribed by my GP.....at my last neuro appointment the Doctor told be point blank the EMG's were a waste of time for me and that as a neuro he would have never ordered them. Again I was told that almost aways the presenting sympom of ALS is weakness......

Listen to the neuro....read the posts here.....and remember that NO ONE on this site has ever received an ALS diagnosis......and we are all still just twitching and cramping away.

Hang Tough!!

Paul
 
Dee Dee,

I forgot to add that I twitch at times in my legs, arms, shoulders, back, hands, feet, butt, scalp......I have yet to have the dreaded tounge twitch....but I'm sure at some point it will probably happen.

You will be fine!

Paul
 
Lovely,

Everything you describe is completely normal with BFS. The pain, the cramping, the anxiety, the not believing the neuro or the emg. It is all completely normal with BFS. Don't worry about the "abnormal" reflexes. I have "brisk" reflexes and have had three different neuro's say they were no big deal, probably caused by anxiety. I had/have cramping, shooting pain, profuse fasciculations all over my body and I have been told by three different neuro's that I suffer from BFS or BCFS (benign cramp fasciculation)or BPFS (benign pain fasciculation). Take your pick, they are all the same condition. If you have had an emg and it was normal, relax. YOU DO NOT HAVE ALS. IF YOU DID, THE EMG WOULD HAVE BEEN ABNORMAL. NORMAL EMG = NO ALS, EVERYTIME! DOCS DON'T MISS ALS/MND ON EMG EXAM. THOSE CONDITIONS JUMP OUT AT THE DOCS ON EMG.

I've been exactly where you are. I didn't think i could make it, but as time passed my mental state improved. You will too. The first thing you need to do is to get the anxiety under control. It is the worst part of BFS (the mental).

Take care,

Gary
 
Thanks everyone. I am so scared. The symptoms seem to be worse. My neuro hasn't even heard of BFS, nor has any of my GP's. My internist thinks that something is going on she just doesn't know what. That scares me to death. I go through the day thinking I am going to die. Sounds silly, but true. I couldn't get through the day if it wasn't for this website. Its my only hope.
 
Lovely,

Most GP's haven't heard of BFS. When I was first given the dx of BFS, my GP said she had never heard of it and immediately referred me to another neuro. If your neuro isn't a neuromuscular specialist, he probably deals with people with bad backs and carpal tunnel type problems. If you want to find a doc that will know about BFS, try your local MDA clinic or teaching institution. Docs at these locations will certainly be familiar with BFS.

Take care,

Gary
 
I noticed that you like to go camping,hiking and i guess an outdoors type of person. think back and see if you remeber getting bit by a tick or a rash on your body? you may have a tick born disease that is causing you hyperreflexes and bfs, If you want to rule out tick born disease wich is reversable! get an igenix test and a test for bartonella,babeisosis,ehlichiosis. these are all transmited by the tick and cause your nervous system to go out of wack. the rash is not always peresent in all cases. also check dr burrascano's diagnositic hints on the web and see if you can see those sypmtoms in yourself. let me know what happens.
eric
 

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