a new neuro?

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

a new neuro?

Postby mml on October 27th, 2004, 6:22 pm

Hi I have never posted before and will try to make a long story short as most of you from what I have read know it already. I am not diagnosed with bfs but it seems to be what I might have as I read all your symtoms I think I have had them all. I was just wondering if you guys think I should seek a second opinion or let things go for a while. I have been twitching now for about a year It started late last fall with some body aches then seemed to subside well over the summer the twitching started again with some charley horses I went t the nerologist my gp had done blood work and everything looked good there. the neuro did some guick strength test (it was like playing simon says he went so fast) checked reflexs said I had benign fasiculations "not a syndrome we don't call it that" and that I should learn to deal with stress I was not under a lot of stress till I got this and went on the web you guys know that story. Visit 2 by then I had constant leg cramps and pain he said I needed to see a specialist(excuse me I thought I was at one) I did not go instead I went back to gp he ordered spinal mri which found herniated disc chiropractor says it could be causing my problems gp says back to neuro which brings me to visit 3 he says no the back is not the cause of my leg problems and I don't have to go to other specialist though but I don't have to come back as long as I don't believe I have als anymore he never did any test no emg said it would only show I was having twitches nothing else I am at this point very confused I think he just thought I was a nutwould you go to another doctor or just give up? Thankyou all and thanks John and Aaron this site has been a great help! Sorry for how long this is.
Selfless giver of time
Selfless giver of time
Posts: 106
Joined: October 19th, 2004, 5:53 pm

Postby LeeNC on October 27th, 2004, 7:37 pm

Hey, if I were giving you professional advice, I'd say "Go to a doctor to rule out any more serious problem." But I'm not a professional. And you've gone to a "specialist."

I went to my GP when my BFS showed up. With the suggestion that my problem was anxiety, I went to a psychologist for a couple months and am still taking Zoloft. I continue to have all but the visible twitches. Thanks to this supportive group of people, I am comfortable enough that I don't feel a need to subject myself and my wallet to EMGs or an MRI. My symptoms (and yours?) are enough like everyone else's here that I feel confident I'd get the same clean test results. Of course, we all hope someone will figure out how to alleviate BFS.

Someone within the last few months put out the question as to who among us had gone without official diagnosis of BFS, and I remember there were quite a few.

For lots of people, it seems to boil down to whether you feel like you need the specialist's reassurance. For most (as far as I know, all) of us, it's annoying but apparently "benign."

Good luck either way.

Posts: 350
Joined: September 16th, 2004, 10:33 am
Location: North Carolina, US

Postby garym on October 27th, 2004, 8:24 pm


Seeking a second opinion on your condition is truly a personal choice. It seems that your neuro is fairly confident that you have benign fasciculations, and that should be reassuring even if he doesn't have very good bed side manners. Personally, I couldn't accept one dr's opinion so I went for a second. I don't really encourage that because the stress/anxiety associated with all the tests can be extreme (at least is was for me). So I guess you have to look at you situation, (one year of twitching without other problems coming up is encouraging and supports bfs) and make a decision based on where you are mentally. Bottom line is to do what you feel is best.

I wish you the very best in this journey, and hope that you make the right choice for you. Either way, I don't believe you can go wrong.

Take care,

Posts: 1893
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Postby johnta on October 28th, 2004, 11:46 am

:D Hi, your story sounds similar in many respects to mine. My doc tested my blood extensively, neuro (saw him 18 months after symptoms began), quickly decided twitches etc were benign, also didn't refer to it as a syndrome.
The key to remember is this - stress is not the cause, BFS does not mean you are the 'nervy' type, whatever your doc believes.

This site is good, I have lived with BFS for 8 years now & have hardly worried about it (despite the annoyance factor) since I saw the neuro - yet still reading all the various stories gives me some comfort to know that I'm not alone.
Enjoy life !!
Posts: 23
Joined: October 14th, 2004, 10:04 am



Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 3 guests