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BFS Online Support Group

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Just downloading

Postby Tricia Bunnell on March 26th, 2004, 9:43 pm

Hi,

I have a son with Tourettes Syndrome. I understand waxing and waning from having a child with TS.

I can't help but wonder if this disorder isn't related to TS.

It was so difficult explaining TS to the schools, etc. and have them look at me like I was from space, and now it's me...my turn to have an unusual disorder. Uckkkk.

Sometimes, I worry that my Rx will stop working and I'll have to live like I did several years ago. I wouldn't want to repeat those years at all. They were VERY painful, not to mention nerve wracking. I was constantly twitching, and mine cramp as well. I didn't sleep for TWO years, or not very well.

I think I'm "waxing" right now. LOL...I don't worry about ALS like others have...I just worry that it'll get bad again like before (gawd...it was SO bad).

I don't think it helped that I was blown off by the neuro either. Sorry for being so negative. It just feels so good to get this off my chest and have others understand!

I knew there was something wrong, but felt like the doctors thought I was nuts. I hate that.

My poor GP. I made him test me for all kinds of things. My Thyroid, my parathyroid, etc. He sent me to the neuro, I think because he couldn't do anything else for me. She blew me off. I still remember how she turned and walked away, like I was making it up or something. That was so depressing!

He has been trying to get me on anti-depressants for years now. Do any of you use them for BFS or it's residual problems? Does it help? What do you use and why?

I had a doc prescribe imipramine once for depression and I ended up in the hospital for 10 days. My husband goes nuts just at the thought. I'm willing to give it a try, just because I think I need the help.

Please...help.

Tricia
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Postby garym on March 28th, 2004, 10:51 am

tricia,

i understand how you feel! I have a lot of pain with my twitches and it really sucks. I've been taking neurontin for about 5 months now, and i'm currently weening off because it hasn't seemed to help the twitching. I think it helps with the pain, but maybe i can find something else for that. As for anti-depressants, I think they can really help some people, so you may want to give it a try. I have tried several over the past couple of months, but i wasn't able to tolerate them........they made me really nervous, and seemed to spike my anxiety (which i have undercontrol, for the most part!).

Good luck to you, and hope this bit of rambling helps a little :? .

Gary
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Postby John on March 28th, 2004, 11:14 pm

If you want my opinion bfs is a residual problem of depression and anxiety ,not the oposite. Anti depressants helped my ,but I wasn't depressed because I twitched, I twitched because I was depressed .

John
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Postby garym on March 29th, 2004, 9:47 pm

John,

if you twitch because you are depressed, then you are lucky. Cure the depression, cure the twitching. I personally think many of us twitch for different reasons, and depression/anxiety can only make it worse for all of us (whether it is or is not the cause).

Gary
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