BFS Online Support Group

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Postby Anthony on September 5th, 2003, 5:13 pm

Arron, Jen do I really need to respond to this from Scott? I thought this was a support group.

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Postby Jenn311 on September 5th, 2003, 5:56 pm

Hi Anthony...

The great thing about the internet is that you don't have to reply to or even acknowledge the posts you find irritating or even insulting. The purpose of this forum is to gain knowledge about BFS, share personal experiences with BFS, and to offer support for those who are suffering from it.

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Postby michelle2 on September 5th, 2003, 9:19 pm

Hi Anthony!
Just wanted to let you know I believe you. I think you are who you say you are.

To all you skeptics: Did you ever think that doctors are people too? They also get sick, worry. With the amount of knowledge Anthony has, he is far better than us at imagining unlikely scenarios with his health. It might also be harder to trust the neurologists when they are your peers. It is very common for MDs to worry about illness they treat in there field. Lots of oncologists worry they have cancer. I've heard of radiologists doing full body CTs on themselves.

As anyone with BFS knows part of the struggle with this is that little corner of doubt that this really could be something else. We all struggle with that at least intermittently. Many people on here admit to having anxiety and depression at times too. Its hard to be rational about something that causes such fear - even for a neurologist.
i don't get what this is??
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Postby SCOTT on September 6th, 2003, 8:04 am

i am not one to try to cause problems here and i always try to support people who need it. i emailed my neuro after seeing the post because it will certanly make ALL people with bfs think they can NEVER STOP WORRING ABOUT IT BEING ALS. this is why i feel it needed to be addressed. i can understand a neuro or dr having feelings of doubt like anyone else...but a muscle disease specialist who gives themself many many emgs over 1.5 years who thinks they still may have sorry but it just does not make sence.
im sorry if this statement angers some but i think this person is causing people to FOREVER DOUBT the benign nature of fasciculations after much time has passed and even after they have a normal emg study.
my nerve and muscle specialist wrote back to me and said "you have benign fasciculations ." nothing more and stay off the internet!
in 20 years he has NEVER SEEN emgs lie or people go months or years and twitch turn out to be als ..after normal emgs and no weakness that it!

just wanted to tell it like it is so others do not freak out because of this odd post !

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Postby Katie on September 7th, 2003, 12:42 pm


In response to Anthony and Scott and everyone else ... my neurologist told me that the people who come to him the most who are worried about neuro diseases are medical students. I think that Anthony is a person just like we are, and it's his body -- not someone else's that he is treating. It's a totally different story when you are diagnosing or treating someone else than when its yourself.

I do believe Anthony, but to be honest, I did a silent "oh no" when I read his post -- since he is a neurologist and is worried about ALS. And I think that's because I want to believe what my neuro tells me -- that I'm okay -- and to hear Anthony question himself scares me for myself. But that's my issue to deal with -- because I worry so much about my own health. I want my doctor to say "you're okay," and then believe him. But you know what, at the end of the day, no matter what my doctor says sometimes, I still worry. I'm on this board today for a reason today -- I'm worried!

Hang in there, Anthony, and everyone else. It would be great if we could all just stop worrying about this.
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