Chris's story

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Postby Ginlyn on August 9th, 2004, 1:05 am

Good idea Stephanie, count me in 100%
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Postby Ava on August 15th, 2004, 11:20 am

Stephanie and Ginny,

Exactly my current plan! I do twitch almost constantly as everyone on this forum knows by now, but when I don't look or concentrate on the feeling of the twitches -- this action is better than Klonopin. I believe this is the answer to my BFS; to learn to live with it and not focus on it and then the days are so much easier.

Footnote to Steph, you seem so much more happy and your posts are more up beat since your current appointment with that wonderful doctor. I'm glad his reassurance did so much for your peace of mind although I know we all need this forum from time to time too.

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Postby Stephanie on August 15th, 2004, 10:01 pm

This site has been the most helpful for me. I can't go one day without checking in. You guys are great!
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Postby Ginlyn on August 16th, 2004, 1:54 am

I second that again, Stephanie.

I feel like I have a whole host of new friends.

:D
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Postby speg on August 17th, 2004, 12:51 pm

Hey,

To the original poster. I can make the outer part of my right hand twitch by flexing it. I got freaked out about this until I asked my husband to do it one night, and his twitched as well. I also had a thumb/pointer finger twitch that lasted for three days. The hand twitches are the scariest.

I am not sure why folks are still worried after one or two years. With the exception of some very rare cases, most ALS patients develop weakness before twitching, and a few more develop it within three to six months.

And don't fixate on old studies that aren't even completely reliable. We are talking about a couple of people out of thousands here!

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my problem

Postby graberc on August 23rd, 2004, 1:08 pm

THanks. .


2 years and you think I could get it through my Mind right?

well if you go 2 years then you get an EMG that shows fibs/swaves in one muscle. . .and large motor unit potential (10%) in another then you get scared. (even though rest of about 7 muscles from back, to arm, to leg, where fine) . . .and I know that everything else was a-okay recruitment, interface pattern, even NO FASICS on the *beep* exam. . plus normal reflexes after 2 years.


You start reading the braintalk mayo study and you see the end where it mentions motor unit potentials. . .

I know that motor unit potentials show some old dammage and unless it is polyphasic with Fibs/swaves I shouldn't be too concerned. . .but I can't help it

and I know that fibs in one muscle can happen easily. . .stretched muscle, twisted neck, who knows. . .the doc says "next time they probally will be gone".


But Now I wake up really early (5am) and I keep thinking of the Neuro saying "I'm optimstic" and I keep turning that over in my mind. It freaks me out to no end. even though my EMG says "patient concerned about als, there were no signs indidantive of ALS or neuropathy present".

Optimistic

So i walk around after 2 years with my 3-6month anxkiety back in my head.
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my problem

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