Been a long time since i posted....Help! scared again

Information about how to manage or reduce the severity of BFS symptoms

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Been a long time since i posted....Help! scared again

Postby Joanne on September 8th, 2003, 10:52 am

It has been awhile since i posted almost a year....my sx have been pretty calm except for the past 2 weeks.....my left arm is feeling funny all the way down to my fingers...my fingers feel a little stiff and feel funny when i use them to pick something up...my strength is there but one finger will not stop twitching.
My fears are not als, but ms or parkinsons..
Last night while sleeping i felt my body tremor...at least i think i did because it did not continue when i woke up from it.
I am scared again and can not get it off my mind...
Thanks for listening any advice would be appreciated.
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Postby kim on September 8th, 2003, 8:09 pm

Hi Joanne,

Sorry to hear of your troubles.

I am not familiar with your posts, but have you been to a neurologist, and have you had testing done for these illnesses? If they were ruled out before, odds are your problem is still BENIGN! The fact that you are worried, will no doubt make things worse. Seeing a Dr. could help you rule this stuff out. But when they do, promise me you'll stop fretting over these things! My experience has been once the anxiety is gone, so are most of the sx's.

MS and Parkinson's are sometimes hard to diagnose, but what you describe doesn't sound like either one.

Good luck!

Kim
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Postby Joanne on September 10th, 2003, 5:09 pm

Kim,
Thanks for the reply, I have been dx with bcfs by Johns Hopkins, when i went there 2 years ago and saw the als specialist.
THe problem with this stuff is, for me anyway, is it lays dorment for awhile then rears its ugly head....
Now today, my arm feels better, twitching has stopped in that hand and the fear has deminished.
Ugggghhh i guess it is something i keep trying to get used to but it is hard,
I have had every sx you can name,
Burning of the legs,
tingling
twitches in every muscles either by itself or my whole body at the same time like i was a xmas tree.
tremors in my thumbs after using scissors, etc.
Cold sensations down the back of my head
muscle soreness all over like i had been hit by a truck
and many more...
Then they go away and i feel fine. Its is strange
Thanks for listening.
Joanne
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Postby kim on September 10th, 2003, 6:42 pm

Joanne,

Sometimes I wonder about the BFS diagnosis. It seems that different people have different ailments. twitching, cramping, aches and pains, lethargy, and so on. Some seem thyroid related, some anxiety, some fibromyalgia, others had reactions to meds. etc. ect.

There is no clear answer, but the one thing to always remember is that it is BENIGN!

I haven't twitched in a while. But who knows, it could come back just like yours did. Some theories would liken this to something like a fibro flare-up. Who knows? Just roll with it, and make the best of a sometimes bad situation.

Kim
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Postby Jenn311 on September 10th, 2003, 6:54 pm

Hey Joanne...

I could have written that post! Except I was never diagnosed at John Hopkins, and it's been five years for me. But the sxs, and the coming and going...I feel your pain, sistah...

Just gotta learn to live with it, we do... :? At least you have a cool trick to show your friends at parties...."The Living Christmas Tree!"

:wink: Jen
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Sounds Familiar

Postby g1 on November 16th, 2003, 1:15 am

Ditto here. Sounds familiar. Except my thumb twitching happens after fencing in competitions where my adreniline level is through the roof. Takes a day or two for it to settle down. The thumb twitching usually freeks me out the most. The twitching everywhere else I just ignore as I know it is BFS and have been told by a doctor and a psych that everything is fine.

When I thought that I was dying etc.. last winter when this all happened I would analyze every twitch while going and coming out of a sleep state. Often when coming out of a sleep state I had a shaky feeling almost everywhere. It felt like the body was shaky/tremoring etc... It's just our brain/conscious self taking over control of the body again. Someone with a degenerative disease is like that 24/7 and on their best day as their brain can't take control. My psych told me that most people just don't pay attention to the weird stuff that happens when they sleep and I shouldn't focus so intensly on it. After hearing that and noting that my wife has the exact same twiches while she is sleeping I realized it was all in my head. It just doesn't worry me now. 11 months later and I am still alive, lifting more weight and in better shape this year than last. I guess I am going to live after all.
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Postby SusanSid on November 19th, 2003, 2:02 am

Hi,
I could relate to all of you. Joanne, I've had BFS symptoms a long time. When I think back, I had them over 10 years ago, but I didn't think about it or worry. THey got really bad 2 years ago this December. I t hink I've had every symptom on this board...well, maybe not every!
I get setbacks too. I had one last week that lasted about 4 days. My twitching in my legs are very noticable and I had a twitch in my left forearm. I could feel a sensation, but could also see the muscle going from my palm side twitching into my hand. I lasted for a couple of days. Then my eye started today. I also think that stress is a major contributer too. Oh well.
I do think that BFS is a very broad diagnosis and there are perhaps many conditions that contribute to it. Such as electrolyte imbalance, fibromyalgia, thyroid problems and so on. It is annoying, to say the least
My worse enemy in all of this is the fear. As I have stated in my emails before...

FEAR IS FALSE EVIDENSE APPEARING REAL

I have to tell that to myself a lot. Hang in there.

I would love it if there were a conference for people who suffer from BFS, but who has the time to get something like that together!? THere would be a room full of twitchers, that would be interesting! ha ha
This website is a God send!
Take care
Sue
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Postby Ray on November 19th, 2003, 1:09 pm

Susan, the conference would be a great idea but I think more realistically a BFS Chat room might be very beneficial for a lot of people. I know I visit this site daily for my dose of BFS news and I think it could be very therapeutic for a lot of people. I have my good and bad days and as much as my family seem to understand I think chatting with fellow BFS'ers would give me that side of support that I (we) need. I know this idea has been bantered around before but perhaps we could start a ground swell and maybe Aaron or John could make this idea come to fruition!

I also want to thank everyone who contributes to this site, it comes in handy when I let my guard down and visit those ALS sites. I guess we never really let go of that thought and we all bide our time as time is the ultimate decider.

Anyways, keep smiling everyone!

Ray
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Postby Jenn311 on November 19th, 2003, 2:10 pm

Hey Guys...

The BFS chatroom won't happen on this site, John V. already nixed that idea...not because he didn't think it was a good idea, but because it was not feasible.

I am hoping one day that there will be a BFS conference (or at least get-together....) It would be great to meet other people who understand what it's like to live with this C***. Any volunteers to set one up?

Jen
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