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Hi Everyone

Postby DonnaKay on September 2nd, 2003, 6:12 pm

Hi Everyone:

I've been visiting the forum on occasion over the past month and thought it might be helpful to some of the newer twitchers if I shared my story. This post is intended only for those who worry that they may have ALS. Sorry for the length -- I hope it helps.

I am a four-year twitching veteran. It started in 1999 when I had bursitis in my right arm. Like so many, I searched the Internet for articles on muscle pain and weakness, and, of course, found a ton of ALS references. I wasn't worried at all because they also talked a lot about twitching, and to my knowledge, I had never twitched.

Well, that lasted about a day. Then I noticed a twitch in my right arm. Then in my calves. Then in my feet. Within a few months, they were literally everywhere.

I did the whole neurotic ALS scare thing after that (Kerrianne, if you read this, in your posts you sound just like me at that point in the ordeal -- only I was too distraught to post). I saw my first neurologist, and he said I had brisk reflexes. Well, that was all I needed to hear -- I was convinced. I developed weakness in my thighs. I could see atrophy in one hand. I saw five different neurologists, had MRI's and nerve conduction studies and two EMG's, drove my family nuts, was a terrible parent to my children, haunted all the forums trying to analyze what was going on. It was hell.

Well, to shorten the story, I recognized that things were out of control and started taking Prozac, and I slowly improved. I may have twitched over the next four years, but I pretty much stopped paying attention to it, so if I did, I don't know about it.

And here's the real kicker. I may never have visited another BFS forum except that a friend of mine in our very small town was recently diagnosed with ALS. As soon as I heard it, I started twitching again! Let me be clear: I am NOT saying that BFS or twitching or whatever is going on is caused by your mind. But for me, at least, I do think anxiety causes hyper-awareness of things that other people might not even notice.

I am posting now because I almost slid right down into the same abyss I was in before, and I want to tell all of you who are doing what I did --please don't waste your life this way. I am going through this disease with my friend, who has great difficulty walking and can't do her job because of weakness in her arms, and it is frightening and tragic and also impossible to mistake. No one knows who may get this plague at any point in the future, but if you aren't weak and getting weaker, then you're well and healthy, and you ought to enjoy it. Maybe even be a support for someone who's not so lucky.

You all are a great support for each other and you are lucky to have each other. I wish everyone good physical and mental health!
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Postby Jenn311 on September 2nd, 2003, 10:01 pm

What a splendid post, Donna....

I can relate to the whole nervous-onset twitching senario. Funny how that works, isn't it?

Thanks for sharing...I hope you can stick around and be an encouragement to all those in need.

Cheers, Jen
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Postby Arron on September 3rd, 2003, 1:03 am

Great post DonnaKay! Thanks for your insight. It will probably help a few people.
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