here comes the fear... help !

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here comes the fear... help !

Postby fabfab on September 24th, 2004, 6:24 am

Hi there,
First, pardon my poor english. I am french and I came to this site because it's very difficult to find anything on BFS in France.
Here's my story.
I am 32. I've been noticing fasciculations for 3 months, stating on my right hand, just under the thumb, and now it's spreading all over my body. I've also experienced problems with my right hand and arm, which I am afraid are weak, and are causing me pain. It's very difficult to say if my "weakness feeling" is purely subjective. It comes and goes with the stress, I think. There is no atrophy - not that I can see.
I came to see a neuro at the end of july. She tested my reflexes, listened to my story, and concluded that there were no need to do an EMG. I told her I was afraid of ALS. She did not reply.
I must say here that i am hypocondriac since the age of 20. I've focused on aids, cancer, heart problems, ms, etc.
Now it is ALS. But how to be sure ?
I read a few days ago that the fasciculations on the tongue were a very bad thing. I started to look at my tongue in a mirror. I noticed a tiny spasm on the right - but tried to reassure me by thinking that my tongue was not at rest, I made it go out of my mouth, doing an effort, and that was it. But I'm still experiencing fear.
I came to do a "normal" doctor a few weeks ago. I said that my muscles were very tense, contracted, that I should see a physiologist, maybe a psy - and told me that fasciculations were just a symptom of my fears. I gave me magnesium - no real effect.
I'd like to be sure I have no als. My story doesn't look like I have it, there is a rationnal person in me that keep saying "come on, you know" but it's so hard to make the fear go away.
What do you think ? My fasciculations come and gon all over the body, some days more than others, depending on sleep, stress, relaxation, etc. Or so I imagine. There is still that thnig on my tongue. I don't feel anything, but I see a little, little twitch on one place when I let it out of my mouth for a long time. Is it normal ?
ANd there's my arm. It hurts a little and my shoulder too, I write a lot, typing all day long, so maybe it's the same with my hand, a kind of professionnal-induced syndrom ?
Can you help me ? Can you tell me it's nothing, or do you have another advice ? Seen two doctors, including one neuro, and they seemed to see no need for an emg, but can I trust them ?
Thanks a lot - your site is great, full of good persons willing to help, and I hope it will work for me.
Fabrice
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Response

Postby graberc on September 24th, 2004, 6:34 am

Bonjour!

welcome to the world of BFS. . . Your story sounds very much like all the other peple on here.

I think your Neuro is right. . twitches by themselves do not worry any neuro. . it is only when combined with strength, reflex changes, etc that a neuro gets worried.

Feelings of weakness are normal, and are apart of your over anylsisi of your body. Your neuro probally did a strength check. . and that is what there looking for.

Looks like you have nothing to worry about. . .but if you can't get past this you can try and push for the emg.
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Postby fabfab on September 24th, 2004, 8:53 am

Thanks.
And what about the little twitch on the tongue when it's out ? I feel strictly nothing, and it's very tiny but...
Does it feel familiar to any of you guys ?
Thanks anyway.
Fabrice
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Postby Barb916 on September 24th, 2004, 9:01 am

Fabrice

Welcome! You have pretty much the same symptoms as everyone else around here. Twitching, aching, percevied weakness etc. We all get that. Myself included! I too get twitching on my tongue. I was told by my neuro that the twitching on the tongue (or anywhere else for that matter) would be constant...never ending ANDaccompanied by progressive weakness (speaking and swallowing difficultities) if it were anything to be concerned about. Not a twitch here and a twitch there. Since your not having true clinical weakness, unable to acutally move your tongue or arm/hand, YOUR FINE!

I have the same fears as you...can I really trust what the docs are telling me? YES! We must, or we will continue to be afraid every day and who wants to live like that! Not me. My GP told me "you are fine until proven otherwise". Well, all your exams are normal which means they have PROVEN you are NORMAL. No worries :D

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Postby fabfab on September 24th, 2004, 9:04 am

Thank you.
This site is great.
Am i the only french guy around ?
F.
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Postby Stephanie on September 24th, 2004, 1:45 pm

My good friend lives in Paris. When she twitched they gave her magnesium injections and called her condition "spasmophilia". It went away. Tonge twitches are nothing to worry about like the one you describe. Never look at it when you stick it out otherwise it will jerk around and look "twitchy". It's better not to look at it at all. You sound like you have nothing more than bfs. Hang in there.
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