'Veteran' sufferer

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

'Veteran' sufferer

Postby Lisa H on October 3rd, 2004, 8:53 pm

Hello all,
I just joined this site after seeing the resources it offers to all BFS sufferers. All I can say is I wish this had been around five years ago! I went through two years of h--- before I found a fellow sufferer online (by pure luck) who saved my sanity and provided me with much of the information that this site has compiled. I won't give the whole sordid story of my BFS--suffice it to say that I have had every symptom there is of this disease, and most of them severely. Five years ago, I made a will, took out a second (significant) life insurance policy, and made a scrapbook for my children to remember me by, because I knew I was dying of ALS. The good news is that although I still have the will and the scrapbook, I have let the second life insurance policy go the way of the dinosaurs.
The main reason I am posting this, however, is to let all of you relatively 'new' sufferers know that there is a light at the end of the tunnel. Although it took a long time for me to finally realize that I was going to live through this disease (even after my diagnosis), my symptoms have finally (after seven years) lessened to the point that they no longer affect my daily life. Don't get me wrong--I still twitch each and every day--but the flare-ups of weakness, clumsiness, nerve pain, numbness, tingling, fatigue, etc., have almost become insignificant. When I look back at the havoc this disease wreaked on my life, I am infinitely grateful for the fact that the information about this disease is correct--thankfully, it does get better over time. And though my physical symptoms were so bad that they were debilitating, the worst of this disease for me was the lack of information and emotional support. Very few of my family or friends had a clue as to what I went through (or the inclination for empathy), because I basically looked 'just fine' to them. I'm sure many of you have the same story, and that is the beauty of this website. What a comfort! Anyway, for all of you out there who have this terrifying syndrome and can't quite convince yourselves that you're going to be okay, take it from me, YOU WILL. I've been there. And for the record, I am an otherwise-healthy 40 year old female with three children (there seem to be a lot of us out there!).
Lisa H
Posts: 20
Joined: October 3rd, 2004, 8:06 pm
Location: Virginia

Postby Bree on October 3rd, 2004, 9:57 pm

Hi Lisa!

Nice to meet a veteran. I'm just at the three-month mark. Just curious, do you have any idea what might have triggered your BFS?

Senior Member
Senior Member
Posts: 56
Joined: September 21st, 2004, 1:18 pm
Location: PA

Postby Ava on October 4th, 2004, 1:39 am

What a lovely post - thank you for the support. It is regretfull that you did not have the benefit of this forum earlier in your course with BFS. My story is much like yours - a pretty bad case of BFS, I'm 41 with 3 kids, and I shared your fears due to an internet search of "muscle twitching". I too took out a substantial life insurance policy and began writing a diary for my kids, tearful all the while, before my neuro exam and before finding this message board.

Now, at the 5 1/2 month mark, I have two clean emgs, multiple clean neuro exams (1 emg and neuro from an ALS specialist at UCSF) and I firmly believe I'm okay. What amazes me is that for a fairly calm individual, I became unglued by this experience. Even after all the doc's told me all was well, it took time to sink in. I twitch all the time - every minute - but now because I'm not "looking" for the twitches, they have seemed to fade away. I notice the bigger ones a few times a day and this makes me think the twitches have been with me for longer than I realized.

During the worst fearful time, I was so stressed and I reflected on how carefree my life had been up until then. Now, I enjoy how carefree my life is. I cherish each day in a way that I didn't know how to then. I am simply so very grateful.

Enjoy your family and again, thanks for the uplifiting message!

Posts: 265
Joined: July 6th, 2004, 11:34 pm
Location: San Francisco

Postby Barb916 on October 7th, 2004, 2:46 pm


Glad you found us! I've in the "club"....38 years old with 3 children. I've been twitching, tingling, numb, internal shaking etc for 6 months now. Unfortunately, I'm still pretty much a mess about the whole thing. I have had 1 clean EMG(4 months ago) but my neuro exams are find slight weakness here and there so of course I'm frantic.

I'm going for a 2nd opinon at a teaching facility. I want to see a nueromuscular specialist this time. I'm waiting to hear from my GP when the appt is.

Did you have any clinical weakness (I can't move my big toe on my left foot) ? I have a some weakness in my hands..not major but it's there and slight tremor. I have buzzing and tingling like mad!...I hate when I get it in my neck. It's just creepy.

I can't see the light at the end of my tunnel yet but I'm still looking!!!

Posts: 284
Joined: August 23rd, 2004, 3:35 pm

Postby Rolon on October 7th, 2004, 7:56 pm

Hi Lisa,

Several months ago, I was right where you were. I made out very specific plans for my funeral.

Although I rarely interact, I have visited this message board almost every day since I found it back in June.

It is a wonderful thing and has really helped me many times.

Glad to hear that you are doing well.
Posts: 28
Joined: September 13th, 2004, 8:18 pm
Location: NW PA



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