Sssooooo pleased to have found this site!!!

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Sssooooo pleased to have found this site!!!

Postby dave_stereophonic on April 16th, 2003, 6:39 am

Hi all, my name's Dave and I'm 19, from the UK. About 18 months ago now i noticed some twitching in my neck. It was on the right hand side of my neck, and felt like a strong, irregular pulse at the time. I wasn't sure what it was, but tried to forget about it. However, over the following weeks, it seemed to get worse, occuring in diferent places over my body - sometimes small twitched under the skin, like in my legs, or whole muscles - in my arms. Well I've always been a bit or a worrier, and this was no exception- I got very scared about what it could be, and this was the start of my symptom searching phase on the internet. Of course, the first thing I found was ALS, which didn't go down too well. As one of the few illnesses that were listed on the web pages I visited, I convinced myself that this was the source of my problems. It didn't help that in a biology lesson we discussed Stephen Hawking, whose picture had me shaking all through the lesson.

I carried on symptom searching, and partly due to my anxiety, my twitching got worse. I convinced myself that I was losing muscle, and spent numerous occasions in school in the bathroom examining my legs and arms. Of course this worrying had other effects on me too, such as trembling, sweating etc which I thought might be connected to the ALS

I stumbled across a health anxiety website, created by a woman called Malissa who had been struggling with health anxiety (HA) for years, and only recently managed to sort herself out. I kinda agreed that I was a bit young to have ALS, and, about 3 months after the twitching had started, my strength and ability had not changed.

Nevertheless, my twitching persisted, and I've spent the last year with ALS in the back of my mind. Also, since then, I've developed pain in my lower back and legs, making me more worried about ALS, or MS. Now, I'm more worried about my legs and back, that I might have MS or that it's a slow progression of ALS, due to my age. But, I'm quite happy that really, the twitching is probably benign. In which case, I've tried having days where I don't drink any coffee (a normally daily consumption) and have realised that I hardly twitch when I don't have any caffiene. Also, whenever I drink a few pints, I spend the next day twitching like mad. What I'm not sure about, is that if the twitching is benign, is it ok to carry on drinking caffeine and alcohol if I don't mind experiencing the twitching?

With my legs and back, is pain in these areas another symptom of BFS? If not, does anyone think I might have Fibromyalgia? Or could it be MS? I also get some pain in my arms and shoulders, and in my ankles and knees.
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Postby Jenn311 on April 16th, 2003, 8:28 am

HI Dave Stereophonic...

That is a cool name! You sound just like the rest of us...Welcome to the world of BFS. Have you been to the doctor yet? I went once...several years ago for the twitching, but she said not to worry if I didn't have weakness...and I haven't been back since, and I've never even been to the neuro. Boy that anxiety can get to you though, can't it? I have had anxieties about my health my whole I know where you are coming from.

I twitch more if I drink caffeine...but I still do...I switched to half calf in the morning though (half reg. and half decaf's pretty good! You should try it. ) Hey I thought the British drank tea anyway! :wink: 19 I don't think you need to worry about ALS. I don't think anyone has ever done a study to see how many people actually suffer from BFS, but I think the people here seem to think it is a much higher percentage than 1 or 2 in 100,000. (as is ALS)...Since it's benign no one seems to give a rat's patooty about finding out! The only terrible effect of this malady is that we all get very stressed out about the twitching. But then, from reading many of these posts, I think most of us that post here suffer from some kind of anxiety or depression, as well as hypochondriasis at some point in our lives (I've been through many boughts myself...).

WEll, take care and keep us posted!
Peace, Jen
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same experience

Postby uben on April 16th, 2003, 12:06 pm

Hi Dave,

I am new on this site but the last weeks I read almost all posts here as a guest. I made the same experience like you - also the never ending comparing of the arms, hands, fingers and so on. It drove me crazy when I noticed a different between the right and left hand - meanwhile I am more calmed down after a clean EMG and neuro exams. Also I have from time to time pain in my legs so that I think that the reason my be the ...
desease. But exercises (tennis, jogging, biking) gives me always the
self-confidence that I have the same strength like before the twitches started (4 months ago). My twitches became better (less and not so strong) the last weeks after I reduced my consumption of coffee - before I drank 8-10 cups of coffee every day. Meanwhile it is only one or two cups ( usually without caffeine). I am not sure if this was the reason or
the clean EMG that the twitches became less. I hope that you feel better soon. I can only advise to read the posts here - the people are really great
supporter for us new BFS patients. The best wishes

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Postby Renae on April 17th, 2003, 1:12 pm

Hi Dave-

Welcome to the site! I'm also fairly new to this site. Your post caught my attention because you asked about Fibromyalgia. I have recently been to a rheumatologist who thinks that I have Fibro. I've also been to several appointments with the Neurologist and have had a clean MRI and EMG. I've had a lot of muscle aches and pains on and off and some pins & needles in my extremities along with the twitching and many other weird symptoms. I'm no expert, but its always worth looking into with your doctor. Some others on this site have mentioned a possible link between fibro and bfs. Who knows? Just thought I'd share...

Hope you're doing well. Hang in there! :D
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