Goodday everybody,My name is Maarten (31 years old) and I'm from the Netherlands. I've been twitching from the beginning of November 2007. I've went to a doctor and 3 weeks after the twitches started I went to a neurologist. He performed an EMG and clinical survey. They were both clean. But the twitches have increased, first only legs now, hands, legs, back, biceps, face, mouth, shoulders,... Can I be confident that it is not ALS or is there a possibilty that it still is ALS? Could it be to soon for the EMG?Is there anyone who know anything (as far as I feel I don't have weakness)Is there a time limit to say when you are clean/safe? months? years?My doctor got a letter from the neurologist saying they don't find anything that points out to a MND, but at the bottom they say: 'if anything changes we want to see the patient back'. Can it change, still develop ALS in the following months?Thank you very muchMaarten
Twitching for Three Months
- Thread starter Maaarten
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IguanaIfYouCan
Member
When a neuro performs a emg and says that is clean, it means that is clean. There are several statements in cleveland clinic forum where doctors says that a clean emg without weakness "pretty much exclude posibilities" of als.The final in the report of your neuro means that if something changes, maybe you have something going on (ej. tyroid problems) that must be looked at. But as far as als, the posibilities are near to zero.This doesn´t means that in ten years every one can develop this illness, but this, if happens (i hope no), has nothing to see with emg performed now.My english is not good, but i hope you can understand what i said.Best regards and don't worry.
Maarten,Relax you do NOT have **S. With no clinical weakness and a clean EMG, you do not have the scary disease! Be calm. Your anxiety only makes the symptoms worse. People with BFS can twitch all over. I should know because I do. It started in my calves and feet. Then I had a remission for a long time. Then it returned big time and I twitched in places I didn't even know I had. ALL doctors say "come back and see me if anything changes". To me, what that means is that there is nothing wrong with you and if this is all you have, then goodbye.There are no guarantees in life. We all know that. You are 31. Is it possible that after age 50 you might be part of the very rare group who has **S? I don't think you should be concerned. Did your doctor give you a diagnosis of BFS? Or did he just tell you that you do not have a NMD? Either way it is a good outcome because if you do not have a NMD and you twitch then you have BFS. Have you seen a list of all of the symptoms that can go along with BFS or BCFS? Not everyone has all of them all of the time and some people never get anything more than twitches. But here is a list I made for myself just in case any of these symptoms appeared:CrampingAches Pains Stiffness Tingling BuzzingNumbnessPins and needles TremorsPerceived weakness (weak or rubbery arms/legs/hands –this is really fatigue...see below) Visible and non-visible shakes (can feel like every organ is shaking sometimes) Body jolts Fatigue (can be extreme...drained, lack of energy, weak rubbery legs/arms) Exercise intolerance (a little exercise makes you feel like you ran a marathon & increases symptoms)I compiled the list based on information here in this forum and my own experiences.Maarten, please relax. I know this can be scary. Frankly, I still flip out when new symptoms hit me or a strange twitch I've never had appears. But all I have to do is read the list of possible symptoms above, and I calm down. Regards,Stacy
paulrational
Well-known member
"Difficulty holding something but not weakness",uhh!!!!!!!!.If statistics are correct 70% [or a high %]of ALS patients will have had BFS to some degree before they had als.
paulrational
Well-known member
Aparently 70% of the population suffer to some degree from benign fascics this cant exclude people who go on develope ALS,years of fascics or cramps or pain in ALS patients before weakness does not mean its caused by ALS.
paulrational
Well-known member
You dont get what im saying,your freaking out over symtoms that dont suggest ALS.Ive had continuous fascics for 6 years and your type of fascic for 18 years,i have no weakness and strong muscles,i also get stiff muscles ,buzzing, burning ,migraine aura stiff neck, tingling ,numbness,CONTINUOUS LOUD TINNITUS heavey muscles Optical issues too, pressure phosphanes rapid heart beat,painfull and clicking joints too but it aint ALS!!! NEITHER IS YOURS.
Hi Maarten,I hope you're doing better. What paulrational is telling you is that with so many people experiencing twitching, it is simply logical that some number of them--no greater than the general population--will develop ALS. They may also develop cancer, get hit by a bus, or gored during the running of the bulls. But there is NO causal link between BFS and ALS--studies have shown this. Don't play the odds, but if you must, think of it this way: if a doctor told you that you had a 1:50,000 chance of beating a fatal illness, would you think those were good odds or would you start getting your affairs in order? ALS is said to appear at the rate of 1-2 per 100,000 people or let's say, 1 in 50,000. For the US, that's about 6000 cases out of a population of 300,000,000. In my state, with a population of about 6,000,000, statistics show that 27,000 people will be diagnosed with some form of cancer this year! 27,000 cases of cancer out of 6,000,000 or 6,000 cases of ALS out of 300,000,000. I hope you get my point, and for those under age 50 or 60 (take your pick), the rate of ALS is even lower. We're all more likely to get cancer or killed in an car accidnet than to get ALS. I know, most forms of cancer have some type of treatment, you can avoid certain behaviors, etc, etc. And at the end of the day, the "odds" are just another statistic--someone somewhere gets even rare diseases. You've had a clean EMG and a good exam; you're 31; and the disease you fear is truly rare, especially when compared to all the other diseases and risks we face in life. Stop worrying and calculating your chances. You're OK.Mark
jokercrisp
Member
I'd say youre fine, like everyone else, and like my neuro told me, " your emg was normal," and in a stern voice, "its a VERRRRY sensitive test that wouldve picked up something if there had been any issues....." I'd say youre fine, find ways to control your anxiety until you become familiar with how your body feels with BFS a little more. To me, its seems to come in waves, some days a lot, some days nothing, some days this sensation, some days that. Altering your diet and getting more exercise, and staying away from the internet have helped me!!B