Another Personal Story

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Another Personal Story

Postby damen on July 13th, 2003, 6:03 pm

Hello everyone. I am a 49 year old man in Portland with 18 months of BFS symptoms. I admit to having been a lurker on this web site for some time and feel I would now like to share my experience with this condition (if anyone cares to read).

I returned from a trip to Orlando in 11/01, promptly came down with a seemingly viral upper and lower respiratory illness, recovered uneventfully, and when returning to my bike exercise program 2 weeks later noted the abrupt onset of bilateral calf fasciculations. The symptoms were constant, worse with my treasured stress-relieving exercise and worse with stress; better with heat, supine position, massage, decreases in stress.

Knowing some about the specter of more serious illness from fasciculations, I visited my PCP. Usual lab studies were normal, exam normal. I've seen 2 neurologists. The first did full exam, EMG, NCV, 12 antibody blood tests all of which were normal (except for the diffuse benign appearing fascics). I saw a second neurologist 6 months later to confirm the apparent diagnosis of BFS, and after full exam and repeat EMG, BFS was confirmed. Knowing this, my symptoms markedly abated with the significant decrese in anxiety about the potential seriousness of other conditions.

During the past year my symptoms have waxed and waned, mostly in the calves and feet but some in the upper body and face. Again, made better and worse by the same factors noted above. I have had 2 remarkable flares of symptoms after plane travel and jet lag. I have visited a clinical psychologist for a few months to help with the anxiety and depression which was somewhat helpful. I was on Paxil low dose for a few weeks and found the side effects intolerable.

I feel reassured about the "benign" nature of the condition but find the incessant symptoms and limitations very challenging to manage long-term. I have benefitted by comments on this site and interested in methods others have used to keep the symptoms as minimal as possible, or even success stories of symptoms disappearing altogether. I've seen the number of posts about various relief with anti-depressants/anxiety agents, nerve membrane stabilizing meds (tegretol, neurontin). I wonder about other treatments like: Mirapex, TENS unit, long-term meditation. Also, I saw one post about a physician in Texas who was doing antibody tests that are generally positive in BFS patients.

Thanks for your interest and I'll look forward to any responses. Thanks, damen
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Glad to have a doc on board

Postby twitchaholic on July 13th, 2003, 6:41 pm

Dear Damen,
What caught my eye about your story was your mention of the calf twitching. I am having a problem figuring out whether I have fasciculations or it this is myokymia. How can I tell? Could you describe yours in more detail? I don't have fine or small twitches as some do. I can look at my right calf (left calf is less bothersome) and literally see what looks like EVERY muscle moving and it is CONSTANT. The whole calf! I am not a doctor so I couldn't tell you what muscles are involved but suffice it to say it looks like all of them in succession. I would say a muscle will move at least twice a second. It doesn't end when I sleep and I wake with it too. Sometime I can feel a nerve jolt up to my hip but nothing and I mean nothing compares to the constant calf movement. I also get a cramp in my calf if I stand on my tiptoes. Do you? Sometimes I get cramps in the right calf at night also.
Are there any long term effects on muscles from this constant twitching? This surely cannot be good for your muscles.
Who knows if it factors in, but I am prone to sinus infections and had one a year ago right before the calf twitching started. Like you, stress has increased over the last few months AND SO HAS THE CALF TWITCHING. Furthermore I had about 2/3 of my thyroid removed in November so I went on Synthroid but my blood test show up as normal. Anyway the twitching started before that but I thought I would throw that in.
I wasn't lucky enought to get the BFS dx but I did get a clean EMG about 6 months ago. My PCP won't order a follow up until November. Isn't that fun?
Anyway, in the meantime I have no weakness so I am not totally freaked yet. I just want to find someone who has the same symptoms.
I haven't tried any anti-depressants and would prefer not to try them but something has GOT to work. Did your doctors mention any dietary deficiencies that may cause this?
One other note: I remember my dad had this in his 40's and 50's so I wonder if this is inherited in some way.
I agree this is challenging to manage long-term. I have a really hard time falling alseep which adds to the irritablilty which adds to the stress which may add to the twitching. Good grief!
I would love to hear your thoughts. So glad you posted instead of lurking for longer.
Lisa
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Postby Jenn311 on July 13th, 2003, 8:54 pm

Hi Damen and Lisa...

I am also glad that you came out of hiding to post on this little site....it is such an asset to have everyone that comes here tell their story. It lets everyone know that they are not alone, and it is such a comfort to have someone to commiserate with. So welcome! Lisa- I suffer from frequent sinus infections as well! I have also read that other people here do as well...I am starting to wonder if it has anything to do with this whole malady...since the sinuses are so close to the brain...Does that sound crazy?
Anyway...glad to have y'all here!
:wink: jen
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Postby twitchaholic on July 13th, 2003, 11:47 pm

Thanks, Jen. I am really anxious to hear what Damen has to say since he is in the medical profession and I am obviously not.
Yeah, sinus infections. I get tons of them. In fact every time I get a cold it turns into a sinus infection. Drives me crazy. True, sinuses are close to the brain. Who knows? Maybe there is some connection. I don't think it sounds crazy, but then I never imagined I would end up with this twitchfest either. My relatives think I am crazy for worrying so much though they acknowledge I have the twitchiest calves they have ever seen.
I like this site too. I like to read all the new posts. You never know what you might learn. I especially liked the most recent post from Brian B. in the general section.
Anyway, thanks for responding.
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Postby Jenn311 on July 14th, 2003, 7:38 am

Hi Lisa,

Have you had your sinuses checked out by an ENT? I finally did, after an infection that wouldn't clear up for MONTHS! He did a CT scan and found that four of my sinuses have no opening to drain properly into my nose, and a few other structural anomolies to boot... So he recommended surgery. I haven't had it yet, but might when I get good insurance. You might want to get that checked out...I am glad that was one mystery solved! Now I just have to figure this one out!

I like your new word, "twitchfest". I think that would be a good name for our first ever BFS convention. Maybe "Twitchfest 2003", you know, invite some musicians to play to raise money for BFS research....I wonder if there are any out there that suffer from this that would be willing to donate their time? OK, I know...I am going on. But it sounds cool!

Oh well! CHeers! Jen
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Postby twitchaholic on July 14th, 2003, 1:23 pm

Jen,
Interestingly enough I am going for a CT scan tomorrow on my sinuses. The head and neck surgeon I saw for my thyroid problem said I have sinus issues and thought it might be a good idea. I went to see him because my tongue was feeling irritated way in the back on the left. He said I had a drainage problem. Gross. I should know the results tomorrow too so I will write you back and let you know.
Yeah, Twitchfest 2003. I like it. Just need to find a band with a good name. How about "Fascicnating?"
Ha ha ha. But I digress as well...
Talk to you soon!
Lisa
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How do we pull off twitch fest

Postby KERRI on July 14th, 2003, 2:29 pm

I think it is a great idea, but how would we pull it off.
Twitch fest that is

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Postby twitchaholic on July 14th, 2003, 8:56 pm

We can pull it off if you all come to my house. It is a constant TWITCHFEST here! I could have the "fest" even if no one attended. :wink:
Plus, I am in the middle of the country. For those outside the US, I suggest a video conference.
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Postby Jenn311 on July 14th, 2003, 9:52 pm

Awesome! I am there! I think Floater aka Aaron has a band called Benign Fasiculation Syndrome, we could ask them....I really like St. Louis! Maybe we could hang a banner from the arch.
Good luck with the CT scan Lisa. I am sure all will be well.
love,
jen, fellow member of Twitchaholics Anonymous.
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Postby Brian_B on July 15th, 2003, 1:38 am

lol that would be kinda cool considering I only live a couple hours away from there
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Postby twitchaholic on July 15th, 2003, 3:58 pm

You know, if anyone out ther is in the midwest we ought to get together and have some fun for a change! Anyone? St. Louis has a great little bar and grill called Seamus McDaniel's. I think I spelled it right. Hey Brian, ever been there? Great burgers.
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Postby Brian_B on July 16th, 2003, 1:11 am

no never been there.....Ive been back in Illinois though since 1999

after working 2 years in north st louis county I got burnt out being always busy every day so I came back to Illinois

two nightclubs are gone now that we(me and co workers) would go to when I still in st louis

I think you said you in Ofallon right? if so where(location) do you work?
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Postby twitchaholic on July 16th, 2003, 3:14 am

I am a portrait artist so I work at home. You can see my website if you look at my profile. Viewers always welcome.
Sorry to hear your hang-outs closed.
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Postby Brian_B on July 17th, 2003, 1:29 am

you luckly you work at home because trying to drive in rush hour traffic sucks......I hated it when I lived in St Charles but worked in st louis county and had to cross bridge over missouri river
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Postby twitchaholic on July 17th, 2003, 3:23 am

I drive the Daniel Boone almost every day and I bet it is ten times worse than it was 2 years ago. Everyone seems to be moving this way. By the way, what town are you in now?
Traffic does not make me happy.
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