20 years of BFS & counting

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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20 years of BFS & counting

Postby EricV on November 3rd, 2003, 7:14 pm

So what is a guy with 20 years of muscle twitching doing on a site like this ? Well, sharing my story hoping that it may help & comfort others, worrying about life and, most of all, death. Yes, you can have 20+ years of BFS without weakness, ALS or other scary stuff and be perfectly healthy.

Actually, I only found out recently that I have BFS. My calf muscles started twitching when I was 19, first occasionally, then continuous. I still find it impressive to look at all this muscle activity in my legs, like a sea in a perfect storm. In the beginning, the movement would drive me nuts & keep me awake at night. Later, it faded in the background and I have slept like a baby ever since. In 1984 there was no internet to poison my mind with unnecessary fears (or give one comfort, such as this wonderful site does) and I was too lazy to see a doctor about it (something that was done in my family only if you were on death's doorstep). So I accepted it and lived with it for 20 years.

Recently, I had an increase in the extent of twitching. Historically, the twiches had only occured in my legs, with continuous twitches in the calfs and the occasional major twitch & cramp in my thighs. Now I have started twitching all over my body (arms, back, face and some other places that I will not mention as they will probably be edited out). New for me are the cramps and the muscles getting really tired even after the simplest of exercises (am really worried about becoming "exercise intolerant" - any good tips out there for increasing tolerance to exercise with BFS ?). There are plenty of possible reasons for the increased fasciculation: (a) more stress at work; (b) intestinal problems treated with Cipro; (c) anxiety because of an erroneous medical diagnosis (Barrett's esophagus, carrying increased risk of cancer); (d) bad sinus infection; (e) recent visit to a country with indigenous Lyme disease, making hikes in the woods. Take your pick, my money is on the stress & anxiety.

Anyway, like many of you I was stupid enough to put "muscle twitching" in a search engine and found all the ALS references, which scared the living daylights out of me. This was before I discovered this website (and posts like Arron's wonderful "BFS in a nutshell") and learned that my chances of developing ALS were very low indeed. Trembling, shaking and close to a nervous breakdown I went to see a good neuro. He smiled at me (with a smile that says "you silly man") when I told him my story, examined me thoroughly and told me that he was 100% sure I have, have had, and probably will always have BFS. Interestingly, he told me that in his long & distinguished career, NONE of his ALS patients had come to see him about fasciculations. Most of them did not know they had any, because their twitches were so weak. They came to see him primarily because of real weakness that made them drop things, fall down, etc. All of his BFS patients, however, mentioned their (concerns about) twitching first. Something to remember.

So there you have it, my story. This is probably my first and last post to this great forum (although I may stick around to find useful suggestions to deal with my own condition). For those of you that have just started twitching or are only a couple of years into it, have it checked out and then stop worrying about it. You will live healthy, productive lives and will not get ALS. Live long with BFS & prosper (I know I will). Remember, the twitches remind you that you are alive (dead people don't twitch) !!!

Cheers, Eric V
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Great

Postby KERRI on November 4th, 2003, 6:33 am

Wow,
I love stories like this, it makes the future look a little brighter.

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Postby marieclare on November 4th, 2003, 11:47 pm

Hey---I am from NO too--I wish i had known you when i was living there and had BFS!!! What part of town do you live in?!!
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Postby EricV on November 5th, 2003, 11:46 pm

marieclare,

I'm not a NO native, but have been living there for 3.5 years now. Was born & raised in Amsterdam, Netherlands (I'm an alien, I'm a legal alien, I'm a Dutchman in New Orleans). Europeans twitch too, you know (particularly the French, with those frog legs :D ). Cheers, Eric V
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new member-very relieved

Postby momx6 on November 6th, 2003, 4:07 pm

Hi everyone,
I can't believe I stumbled on to this site.
Here is my story.
I have had recurrent eye infections for a while. Finally, my eye dr. put me on Doxycycline (antibiotic) around June '03. Sometime, shortly thereafter, I started twitching. Every symptom I have read so far on this site I have been having. Right down to the person with the index finger pain!
The end of August as I was watching the Jerry Lewis Telethon (which I have hardly ever watched before) there was a man being interviewed who had ALS and mentioned his leg twitching. You can imagine the panic as I realized I had been having these symptoms also and had just realized it!
I have had a history of being a hypochondriac ever since my days of working in the hospital enviornment. I realized also I have been under an extreme amount of stress recently. So, I have not gone to my MD because of fear and not wanting to have a horrible diagnosis and my family's insurance being affected. I was also misdiagnosed in the past with a possible deadly disease. So I knew what I was in for as far as testing etc...I went through an unnecessary kidney biopsy (very painful)
early in my 20's.
I have been going through extreme amounts of anxiety over this which of course makes it worse. I started the vitamin routine only to find minimal relief. The bottom of my feet actually twitch. My upper lip. Just about every part of me. I imagine other pains too. No weaknesses or numbness thankfully.
Since I found this site, through a message posted on Dr. Weil's site last evening, I have slept better and feel like I can cope with this.
I have also finished another round of antibiotics( same kind) recently and I am beginning to think there is a strong connection.
I am a busy mom of 6 and homeschool also. Thank you so much and I am amazed there are so many of us out there.
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new member-very relieved

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