Billy W~ and anyone with twitching~ - Neuromuscular Diseases Message Board

reneeintx · 06-21-2003, 05:53 PM

I've had this crazy sensation since December 02. I got really scared because of typing "twitch" on the net and it read people with twitching sometimes have ALS. I was terrified.

I went to a neurologist and had an emg/ncv. Emg-test of the muscles, ncv-test of the nerves. Everything came out fine. I've learned ALS is very rare, and lots of conditions can cause twitching..ex(back problems, nutritional defeciencies, thyroid problems).

I was diagonsed with benign fasciculation syndrome(BFS) Basically it's a hyper-excited nervous system. The neuro told me it can happen after prolonged stressing or from a virus. It kinda just hangs in you, like a herpes virus. The good thing is it won't kill you. The bad side is, it can hang around for months, years, or forever

Really, I'm not trying to scare anyone but I'm just giving the facts as I was told.

I was prescribed xanax to use on occasion. Some people take neurotin to control the bad twithing days. IF you want to read more about it go to the "rare disorders" board here. There's alot of posts on twitching and BFS.

I sometimes have days where I don't hardly twitch at all, and on others it's all over my body, twitch, twitch, twitch.

Renee~ a fellow twitcher

BillyW · 06-21-2003, 11:05 PM

Renee,

I'm indebted to you for this thread.

At first I thought that the "twitching" I was experiencing was more like the congested movement of random blood through my veins or so. I wasn't thinking "muscle", you know? I was thinking "veins," low and high blood pressure.

So can you tell me, does your twitching feel in anyway like the movement of blood in your veins? I mean, this was the first impression I had of the symptoms. I also get (though much much less frequently) the same rapid and random "tap tap tap" feeling at the base of the front of my neck. And, again, I'm always thinking "blood", when I feel it. I'm not thinking "muscle twitching."

I know all of my laymen's ranting is ridiculous. The best thing to do is see a doctor, but I can't help but to be a little more curious, you know? and you seem to knowledgable about it.

I don't have the problem, pretty much at all, when I'm in movement, when I'm standing or walking. It comes to me when I'm sitting down on a chair and when I'm laying down on a bed though much less so. At first I thought that maybe I was experiencing symptoms of Diabetes, but as my blood and urine sugar levels are fine, this isn't the case.

Any thoughts?

Thanks again for the thread. I hope others will contribute too or find what they're looking for in it.

[This message has been edited by BillyW (edited 06-22-2003).]

Kari Hope · 06-23-2003, 07:44 AM

Renee,

I found this BFS on the Rare Disorders board last night, and contrary to "scaring" me, you have helped to relieve me. I could find no one who had any clue as to what I was feeling, and I truly was starting to think I was crazy. I KNEW I couldn't be the only one in the world with this! Thanks for sharing your story. I will come back to this board often to learn, get support, and hopefully help anyone I can!

Kari Hope · 06-23-2003, 07:44 AM

Renee,

I found this BFS on the Rare Disorders board last night, and contrary to "scaring" me, you have helped to relieve me. I could find no one who had any clue as to what I was feeling, and I truly was starting to think I was crazy. I KNEW I couldn't be the only one in the world with this! Thanks for sharing your story. I will come back to this board often to learn, get support, and hopefully help anyone I can!

reneeintx · 06-23-2003, 10:33 AM

Billy and Kari~

When I'm walking or doing other physical things, I don't have the twitching..or at least I don't notice it. Billy, sometimes I guess it does feel like taps or knocking. Most of the time it's when I'm sitting, like at the computer, right now, I felt a couple taps while sitting here. My "hot spot" that sometimes people refer to is my feet. The arches of my feet will get a tickling movement. I can look when this is happening, my toes move slightly.

I never really thought of it as "blood going through the veins" I guess we all wonder about it differently. Mine started with a simple eye twitch that lasted for a month then the twitches were all over my body. I must say back in december when this was going full force I was more freaked out more then I am now. The twitching is less frequent, which makes me so happy. Some days I forget I even have this annoying condition.

Kari~I'm glad you don't feel you're the "only one". There are lots of people that twitch. Believe me, it's a BIG GROUP.

If you still freak out on occasion. Let a neurologist, preferably someone that specializes in movement disorders, a doc that deals with bfs, ms, parkinsons and als on a regular basis, do your evaluation. I've talked to other BFSers that went to your run of the mill neuro and some of these doc's never heard of bfs. A regular neurologist basically sees people with back problems, and headache disorders.

I went to a movement disorder specialist that worked at an ALS clinic for 3 years at a major teaching university. My regular gp referred him.

Anyway remember..this condition isn't too bad to live with. There are other things alot worse than this. If either of you are worried please see a neuro and get an emg. It will help alleviate any fears you're having.

Renee