i've had bfs for over 2 years now

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i've had bfs for over 2 years now

Postby patricia bunnell on July 23rd, 2003, 7:29 pm

Hi...I'm new. I've had bfs for over two years now, but was only recently diagnosed. The thing that frustrates me, but should put a smile on your face is that I found the diagnosis myself on the internet. It was this website that finally gave me the answers to all my twitching/cramping. It was weird that having a "diagnosis" would make me "happy", but after going through so many tests and having doctors continually tell me they couldn't find anything wrong I was finally relieved. My experiences with bfs...well, I don't know what ya'll have experienced but here are mine:

1. Twitches
2. Flinching
3. Quivers (muscles just quiver)
4. Cramping

My cramping had many faces too. I had it worse when my muscles were relaxed, mostly while sleeping, but not limited to that. I am taking Tegretol and it has helped. My cramping was so severe, that I'm grateful for the relief through medication. I also take calcium/magnisium. It helps some what. I haven't noticed that alcohol affects it, but I'll be watching for that now. I'm not a drinker so it may be a while before I'll know. I did notice that anything that was supposed to boost my metabolism caused me to suffer. Ephedra, ginsing, caffiene, bee pollen, and psuedephed for stuffy nose too.

I've read everything I can get my hands on. I'm not one of the lucky ones where it only affects me for a few months (obviously), however this condition has come and gone before so maybe I was lucky for awhile.

I've had it so bad at times that twitching in my temple area would cause my lower jaw to move. Also along my right ankle that while walking it would make my foot turn in. I thought I had a brain tumor or somthing lol. Stepping into a shoe would cause terrible charlie horses in the arch of my foot. At night while sleeping I'd be jolted awake by a cramp that I thought would twist my foot right off my leg and I'd get two or three more cramps in different parts of my body trying to work it out.

I hope to learn as much as I can. Aaron...you rock, keep asking questions. I don't know if you're a doctor or just a deep thinker.

Tricia
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Postby Brian_B on July 23rd, 2003, 11:03 pm

Ive had it for about 2 years now. While I was never told yes its BFS I was told that its nothing serious like MS or ALS.

I have an online friend thats a neurologist and he also has had BFS for over 2 years.

hes been the most help to me because hes a doctor that also has BFS and he had the same fears as everyone else even though he said that he should have known better.
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p.s.

Postby Brian_B on July 23rd, 2003, 11:07 pm

I forgot to add that the doctor I know with BFS recently emailed me and was saying that we(anyone with BFS including him) need to accept that we might very well twitch forever but to put it in perspective its not that bad.
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Postby twitchaholic on July 23rd, 2003, 11:09 pm

Could you convince your doctor friend to join the forum and write anything that might help so many of us who are terrified STILL? It would be great to have him available to share. What do you think? Any chance?
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Postby Brian_B on July 23rd, 2003, 11:13 pm

hes usually busy, but whats your email address? I can email you a few emails that he and I have sent back and forth in past couple weeks.
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Postby twitchaholic on July 23rd, 2003, 11:18 pm

I would love that. Thank you so much. It is
[email protected]
Thanks Brian.
Lisa
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Postby Brian_B on July 23rd, 2003, 11:28 pm

ok I sent them to you
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Postby twitchaholic on July 23rd, 2003, 11:29 pm

Thank you so much! I will let you know once I have read them. Have a great day!
Lisa
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Postby Brian_B on July 23rd, 2003, 11:32 pm

I know you said before too that you knew some cops in st louis area right? just wondered who do you know? a couple guys in my academy class went to Ofallon and a couple are st charles county deputies and a couple in wentzville and lake st louis.

I miss working there but I dont miss living there.
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