Do ya remember me?

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Do ya remember me?

Postby Airmade on February 25th, 2004, 10:55 am

Hi fellow twitchers!
I used to post here something like 1 and 1/2 year ago.
I decided to stop doing reserch on internet 'couse of my anxiety, so I left the board and tried to stop thinking about BFS.

Now it's 2,5 years that my symptom began... I still twitch (anytime.. anywhere :evil: ), I'm not scared anymore about this stuff... but sometimes it really stresses me!!!

In the past 2,5 years my twiches worsened, then improved, then worsened again... (good/bad/good/bad/ periods).

I can distinguish bad periods from good ones by the famous "HOT SPOTS". Now it's about 2 months my eyelid fasiculate (never lasted so long). It seem to be a "down" period.

As I told before I'm not scared or worried about bad illness, but anyway I'm a very anxious guy.
Of course anxiety does't help... and my twiches sometimes make me angry, stressed and depressed.
I wish one day my muscles stop to be "crazy"... I'm 23 y. o. and I am already fed-up of this stupid thing.

Went to many neuros, done EMG (clean), asked myself "why?" (got no answers yet)....

I would like to try some meds to reduce it (at least)... I tried Neurontin in the past... it helped a bit, but then when I tried again it didn't work at all.
What can you advice me about meds? (I would like to try somethintg just in the bad period.. just like this one) :(

Unfortunatelly except the Mayo Clinic study and some few rows in the books... few info are availablable... and NO UPDATES AT ALL!!!

I wish someone could tell us why, and where the problem is!

Thank's a lot for listening, my friends. And sorry for my bad English!

Wish you BFS FREE!

Airmade.
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Postby Arron on March 4th, 2004, 1:04 pm

Hello airmade, of course we remember you and thanks for coming back to show other's that even though we twitch, life just goes-on :-)

I also like the way you showed people that sometimes when people "think" some kind of med works to help relieve the symptoms of BFS, it just comes back again.

So far there is nothing that really helps. There is a major "placebo effect" when taking meds for BFS and I have tried to explain this many times in the past. My positive point to this is that even though no meds "really" help. it's NO BIG DEAL!! BFS is BENIGN and life just goes-on when you don't let it "get to you" or annoy you. That's what I have done and it works!

I am too dog gone busy to be bothered by it. Although I just had an emergency appendectomy and I have to say that since the day after the surgery, I have twitched more since then, than I have in a whole year! Probably becaused of body stress and "trauma" my system went through and we all know how stress aggrivates this stuff. It could also poissibly be becauase of the Morophene and Vicodin or whatever else they had me on. Either way... WHO CARES? It's BENIGN and I just move-on, just like you did airmade, and ALL of the people reading this should do the same thing.

NO ONE on this web site, has developed ALS or has been wheel chair bound... NO ONE! Doesn't that say something?

I thank you Airmade for coming back and supporting people on here by showing them that you can twitch and life goes-on as usual.

Yes, the twitching, tremoring, exercise intolerance, occasional cramp like feelings, weak "feelings" and so on, are annoying, but other people have migrane headaches, chronic stomach problems (ulcers, diarhea, etc.) and about a zillion other daily problems, so it's not like we are alone with our strange and un-explained problems.

Try and explain why migrane headaches happen... no one is "really "sure, but they do. It certainly doesn't measn people that have them are going to get a brain tumor or get brain cancer, just as people with BFS have no reason to be aftaid that they are going to get ALS or some kind of NMD.

Go on with your life and try not to worry about this stuff :-)
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