My BFS diagnosed as Autoimmune Disorder(Isaacs Disease)

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

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Postby Sahti on November 29th, 2003, 4:49 am

I believe that Sue summed it up pretty much.
Dale, you can't categorize us all as a bunch of people whose only health problem is BFS. Like I've mentioned above, I have some pretty nasty (and sometimes fatal) afflictions that are not benign. Sue works at a hospital, she understands too.
And you're right, BFS is a benign syndrome, it doesn't take much effort to find that out. It's not going to kill us or harm us. However, for varying individuals it can be more severe and harder to cope with, you know? Do you think some of us enjoy talking to someone while our facial muscles are going crazy? No. It's embarrassing and annoying. Is it going to harm us? No. That doesn't justify the way it makes us feel.

My cousin once had a benign tumor on her spine that caused her excrutiating pain... though it wasn't going to kill her (hence benign), it still made her feel uncomfortable. It took specialists 2 years to find out that she even had a tumor.

Lastly, I'll define for you "people with hope".. I'm not speaking of those who jump to conclusions and instantly think they're doomed. The medical experts are basically clueless about this syndrome, right? That has to spark up SOME type of curiousity, so we do our own research and hope we find some answers. And who knows, we might stumble upon something that could help our own situation... and we wouldn't have to give such an annoying little thing a second thought.

PS - I was unsure if you were familiar with the term "hawty".. don't take it offensivlely, we both got our point across
:wink:
-Nova
"The most important things are the hardest to say, because words diminish them." - Stephen King
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Postby SusanSid on November 30th, 2003, 11:44 am

Dale,
After calming down and reading all the posts again, I agree with you in many ways. I still like to hear other input, but I didn't mean to come down so hard on you. Guess I got too defensive :oops: Not only that, we need to put our engergies into support rather than being *beep* off at one another :wink:
Thanks for your input on this board

Sue
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Postby Dale on November 30th, 2003, 12:12 pm

Holy ropin'!!

Sahti - where in my post did I ever "[b]categorize us all as a bunch of people whose only health problem is BFS"[/b]??? I'm assuming you have BFS otherwise why would you be here? If you have other health issues, that's none of my business or this BB. On this BB we discuss/share our experiences with BFS.

"[b]The medical experts are basically clueless about this syndrome, right? That has to spark up SOME type of curiousity, so we do our own research and hope we find some answers"[/b] Wrong, wrong, wrong. I'll bet 99.9% of the people on this BB who have seen a neuro about their concerns have been told its BFS or just plain benign. I'll bet they've also been told to relax. I'm not sure what part of the world you live in, but up here in Canada, my Neuro diagnosed me pretty fast. I didn't waste another second doing my own research in the hope of finding answers. After all, I'm not the "medical expert".

SusanSid: "[b]Guess my point is, don't assume that others that have concerns on this board are clueless, uncaring, self absorbed and out of touch"[/b]

Your comment is completely false. Don't ever post comments about what I assume. You have absolutely no idea what I assume. I have NEVER posted anywhere on this BB saying that individuals are clueless, uncaring, self absorbed and out of touch. Give your head a shake PLEASE!!
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Postby Sahti on November 30th, 2003, 6:22 pm

Ok, CHILL OUT! Please?!

No need to get defensive! You don't have to quote me, I know what I said, and I was responding to what I believed you were implying. But I will quote my Neurologist; he informed me that '(he) nor anyone else knows exactly why people have fascics'.

I'm not trying to be rude, but perhaps you should turn your attention to your attitude rather than BFS.
And you can't tell people what and what not to post, that's up to the moderator.

-Nova
I won't be replying to this thread anymore, unless it's information concerning the topic.
"The most important things are the hardest to say, because words diminish them." - Stephen King
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Postby Nole on November 30th, 2003, 8:57 pm

I think you all need to settle down. Life is too short to argue with others over a BENIGN condition. Everyone has a right to express their opinions onthis site, if you odn t like you dont have to read it. Lets remember whywe come here, for SUPPORT, not fighting! Go out and live your lifes,be happy, twitch on and accept that :D !
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Wow - I didn't mean to set off such a flurry!

Postby solarisle on December 1st, 2003, 2:46 pm

Let me start out by clarifying that I was diagnosed with Isaacs Syndrome by the Neuro I saw last week. I pressed him extensivley in conversation and he said his diagnosis was a mild case of the disease due to the fact that I had very little muscle stiffness. His diagnosis was based on his expertise - he specializes in autoimmune disorders. He could not be sure if it would get worse or not, but that after having it for 3 years I was doing well.

I was taken aback by some comments on the board last week. I also appreciate all the supporting comments and subsequent posts. My intent in posting is that I was diagnosed with BFS 3 years ago, and if I can share some info. that may help us all understand what we are dealing with, then it is worth it. I have battled with all the typical questions we all have and the psychological mayhem that goes along with it.

I suffered with Guaillain-Barre 13 years ago and was paralyzed over most of my body from the virus, which destroys your Mylan. I spent 3 years recovering - had to learn to walk, talk, and write again. So I know something about being really sick!

I never intended to create any problems for anyone through the sharing my situation.

Regards, Solarisle
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Wow - I didn't mean to set off such a flurry!

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