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sailinglady

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Hello everyoneYou all like "old timers" (am I that already ?) saying Hi so here I am ! (again).I won't repeat the clinical story, its the same as yours...absolutely.I will say I get palpitations as a reflex response when the "about community" splash screen comes up, which says a lot, even though I can honestly say I have not the slightest residual ALS fear, which in truth was a fear I largely developed from this well-meaning board.I am a UK GP (PCP in US I think) and since getting BFS myself I am hyperaware of other peoples' (patients) twitches. They are SO COMMON. I see somebody with BFS style twitches every day, at least once. I do quite a lot of minor surgery on patients (vasectomy anyone ?) and get to look at close quarters at feet and calves. As a rough guide I would say as many as one in 10 guys (obviously) have calves that twitch like mine do. Most of them don't know it. I don't upset them by asking ! - I guess if they've got ALS they'll know soon enough ! (a joke BTW). Twitching is very common and practically meaningless.I've seen a handful of patients with twitches and other (unrelated) signs which necessitated referral to a neurologist and have yet to (ever) meet a patient with ALS. I have 18000 patients in my practice. I did meet a fellow BFS patient who was in a real mental pickle with it all and referred him. The neurologist pretty much said not to waste his time ! (well regarded and did the necessary - patient reassured and better - so worthwhile I think).Thanks again to all who helped. To newbies - don't stick around too long. Its not good for you.
 
Post of the year. Thanks! I have sort of come to the same conclusions when it comes to my twitching. I bet it was going on for a long long time before I ever started to pay attention to it. I think it's just one of those things where if you don't pay attention to it, it doesn't bother you. And then the minute you start to focus on it... BAM... now it's all you can notice. I have noticed the same thing happens with my breathing as well. If you start focusing on how much air you take in when you breathe, suddenly it seems like you can't draw a full breath. But if you just focus on something else and let your body do what it is supposed to do, you start to breathe normally again. It's just one of those things that (like twitches) once you focus on, you can't UNfocus.P.S. As someone who has had a vasectomy myself, thank you for doing what you do. And with a steady hand, too! Nothing worse than a twitchy and jumpy vasectomy-snipper!
 
Hello GPDon't you have SENSORY stuff going on too?----I read some of your post and you think it's virus related (herpes?). You may be true.I can say that it is NOT "stress" related.I'm an old timer too. I got BFS in 1992. There was NO Internet (or just the beginning), i was NOT aware of ALS. Barely i can say ... i did know NOTHING at all, i was an idiot. I wasn't thinking "I'm going to die". I even did not go to my doc and just asked to my physiotherapist (i had a neck pain this time) about "what he think is this crap" (i got that BFS some months after the neck trouble started) and the physiotherapist pick up the phone himself to get an appointment for me to the neuro.So the "stress/anxiety" connection is, for me, a real "crap".----Since you're thinking it is virus related (triggering of some sort of auto-immune action) don't expect that this "crap" will stay on it's corner quietly for the rest of your life (unless you're lucky).In 1999 i get my first "flare-up" that lasted about 6 months.5 years ago, my third one ...And last year (august 2008), my fourth one!... right in the middle of my vacations. I had stopped smoking, i was doing hiking in the Alps, taking sun, quit definitively my "stupid" job, i was enjoying life again ... etc.And ... guess what ... new symptoms mainly sensory ones (prickly feeling/migrating pains/ ..etc) + trouble with bowel (constipation) + trouble with bladder (urinary urgency).Lot of peoples here on that board come back and say "new symptoms" as far as i can see after MANY years ...The only thing that helped me?I stopped completely coffee + tea.Since then, i can barely feel the twitches ... and the sensory stuff decreased to the point i can go to sleep and have "no buzzing" in my left leg and reduced sensory stuff.I don't know if there is a season/sun relation but i was a lot better during last summer.----I had an MRI one month ago an it was a real nightmare during the exam. All my back was full of twitches and my legs started to tingle a lot ... and you have to "not move" ... you want to jump out of this.So i will have the "MRI reading" next week (It's long here in Canada to go through the "stupid" health care ..) but i don't expect anything.ByeHave a good BFS life
 
Hello PinprickI now believe firmly that it's a consequence of an infection. I did have tingling (like Carpal Tunnel Syndrome) in both hands for a month before the twitches began, never having had this before, and never since then either. I also had chest wall pains.I did have a fever for 3 days and persistent nausea plus belching for many weeks. This says to me polyneuropathy (sensory, motor, autonomic) probably of viral insult. Whether by direct attack or indirectly by triggering an autoimmune response is debatable. All the sensory stuff went away and the twitches are unchanging (within day to day variability) so I favour viral attack, Little bug came, did its stuff, and is now either dormant or gone away for good.Stress and emotional upset can alter the body's immune response so maybe there's something to it, but its indirect.All conjecture ! See you all in a year.
 
sailinglady,Thanks for your post. It was very helpful and reminded me how inaccurate medical articles or doctors can be about the frequency with which certain phenomenon occur. I went through a period where I was worried about moles and freckles etc. Yes, my fears went to the level of health anxiety but they were very deliberately brought on by doctors trying to milk me for every cent they could. This did not only happen to me but to many others as I later found out. Anyway, during that phase I had a tiny, tiny brown dot on my lip that I debated over whether to biopsy. I never did. But I researched how common lip freckles were. I found from the Internet that they were very rare. As a teacher, however, I get up close to a new batch of 200 kids every year. At least 10 percent every year have very noticeable lip freckles (noticeable even from a distance), so it is obviously not rare. Like you I never say anything to them but notice it and when I do it always reassures me.Krackersones
 

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