RELAX -- I'VE HAD BFS FOR 25 YEARS!

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.

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RELAX -- I'VE HAD BFS FOR 25 YEARS!

Postby ANDRU on January 23rd, 2003, 8:30 pm

Hello, BFSers...

Wow. Now I know it's true -- you can find ANYTHING on the Net. I'm so glad to have found this site.

Here's my experience. I was about 15 years old when I began to notice persistant twitches in my arms, hands, legs and face. It would migrate all over my body; different places, different frequencies, etc. (you all know the symptoms!) Anyway, I was never formally diagnosed with BFS (this was 1977 or so), but I was assured that I didn't have a degenerative muscle disease. But my doctor at the time DID tell me that it would get better/worse depending on my levels of stress. Sure enough, when I got my first job (a good one) and a great wife, my symptoms subsided (though they never completely went away). From about 1985 to 2000, it wasn't that bad - a few episodes of constant twitching, but nothing really aggravating.

Recently, however, alot of stress has returned to my life and my twitches have gotten as bad as they were in the late 70s/early 80s. So, I am convinced that the best treatment for BFS is to RELAX, however you can. And get enough sleep. Hopefully, I will soon find a way to "de-stress" and mellow the symptoms of BFS.

The main thing I wanted you all to know is that I've suffered from BFS for 25 years and I STILL don't have ALS, LGD, or Parkinson's Disease! So I'll bet that most of you are gonna be okay, too. Good luck!

---Andru
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Postby Davidd on January 23rd, 2003, 8:59 pm

Andru-

You win the award for the longest BFS "sufferer" out there that has surfaced up on the internet (for now anyway!). Thank you for sharing your story. I am wondering what prompted you after all these years to look up websites that deal with this condition?

As for me, I have been told that the twitching in my calves may be caused by the nerve irritation due to to degenerating discs in my spine but I still find that my symptoms seems to mimic those that don't have this physical problem so I wonder if the doctors that told me this are correct? I may never know.

Anyway, welcome aboard!

--David
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hello andru (our new ray of hope)

Postby reneeintx on January 25th, 2003, 1:19 pm

Hi :) Thanks so much for your post. My twitching just started two weeks before Christmas 2002. You make me feel more hopeful this thing isn't going to do me in. Did you go to alot of doctors when it first started? I'm going for a neuro appt. feb 13. I'm so frightened. I have no weakness but am very anxious. I've been on prozac for 9 years and am currently on synthroid for thyroid problems. I always wandered if these med's were responsible for any of my problems. I hate this twithing. Especially in my feet and calves. It feels like bugs crawling on me. I admire you for not freaking out after all these years. I hope I'm alive and kickin in 25 years.
Thanks for listening to my ramblin'
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DOCTORS CAN ONLY GIVE YOU PEACE-OF-MIND

Postby ANDRU on January 25th, 2003, 6:25 pm

Hi, Renee...

Yes, of course I went to the docs. Had a battery of tests. Thank god my head wasn't full of thoughts about MS and ALS (I was only 15 and I hadn't done alot of research). If I recall, I had a CAT scan and had to do a bunch of strength tests. The doctors said it was nothing serious, but they never used the term "BFS" or "benign fasciculation syndrome", so I didn't know this had a name until about 4 days ago. Yes, having this for 25 years is irritating, but as I've said in my posts, after so long, I don't even notice it most of the time. I hope your condition goes away entirely, but if it doesn't, believe me you'll be okay. Good luck!

---Andru
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You're a fine additon to this bfs family

Postby reneeintx on January 25th, 2003, 11:57 pm

If my math is right are you 39,40? I'm 39 and holding!!!!!!!!!! I hope bringing up age doesn't bother you. It does me sometimes but hell at least I've made it this long. I think it was a good thing that you were young (the young are always immortal) when the symptoms started. You just didn't have a clue of how serious this could be. Being naieve is bliss sometimes. I still worry, but on the positive side I do get more foot rubs from my husband when my calves and arches are twitchin' :D
When your twitches get bad enough and you have to "de-stress" go over to the old tape deck blow the dust off the the old 8 track tape and sit back with your favorite drink and hopefully Eddie Money will be blaring out of your 3 foot speakers singing "I got two tickets to paradise" Just don't put on your platform shoes! LOL I love that old song.
Keep posting so everyone can keep positive thoughts!
We need it here.
Renee
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Postby Andre on February 11th, 2003, 10:29 pm

Andru,

When I was diagnosed with BFS about 7 years ago, I was told it would eventually go away. It hasn't went away or gotten any better or worse. Have your symptoms gotten any better or worse over time (disregarding any intermittent periods where there is stress and anxiety)? I'm 24 and just wondering if this is going to be with me the rest of my life.

Thanks,
Andre
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For all of you guys that are scared

Postby KERRI on July 10th, 2003, 6:24 am

Hi
Andru twitched for 25 years, and he is alive and kicking if we all think positively enough and believe we can all be Andru.


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Postby Arron on July 11th, 2003, 12:41 am

If BFS was a pre-curser to ALS, (as some people have suggested on this board before) then people like Andru wouldn't be around any more :-) and there would be a hell of a lot of malpractice suits being filed. Hear of any lately??

BFS is BENIGN! There are LOTS of people out there that have twitched for decades and not given it a second thought. They just weren't unlucky enought to put the word "twitch" in a search engine to become involved in the never ending ALS scare. Good for them! I wish I had never done that either!
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Longest BFS sufferer?

Postby Roger on February 18th, 2005, 6:45 pm

I have been suffering from continual twitching, mainly in my calf muscles ever since I was at Uni. The condition followed a viral fever that lasted about two weeks. I too have managed to hold down a job(teacher) and have a wife and three children, all now grown up. I have recently had to take early retirement, however as the stress of my job was increasing and I no longer had the energy to cope with it and the symptoms(which have recently got worse). I have had the condition for 33 years. Is this a record?
Best of luck. I hope your symptoms lessen.
Roger
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Re: Longest BFS sufferer?

Postby Ish on February 20th, 2005, 11:37 pm

Roger wrote: ... I have recently had to take early retirement, however as the stress of my job was increasing and I no longer had the energy to cope with it and the symptoms...


This is a point that sometimes gets lost it the rush to reassure. Some of us suffer considerably from our symptoms. I have given up my career,which is a blow both emotionally and financially. And my plans for my family, which is an every greater blow. It just isn't possible to do the things I wanted to with the fatigue. And it isn't clear yet how much more I need to give up as they get worse and worse every month.

BFS is a big big problem for me. But I have no fear that my BFS is something else; that worry lasted only a couple weeks a long time ago. And I'm not bothered the sensations, so I don't need to be distracted. I would just like a little more hope that the symptoms can be relieved, someday, so I can have a little bit of my old life back. A little bit anyway.
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Re: Longest BFS sufferer?

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