Worried and Twitching: How to Cope

[coty721]

Im sitting here and was worried, all of a sudden it came over me, how does this never end? I´ve read and read, some things make me feel good and some of them really stress me out. When I started to twitch alot I told my boyfriend about it and he was like; " Oh, whats weird with the twitching? Ive had it a little now and then and I´ve had it for as long as I can remember". Me on the other hand, got it, googled it and hell broke lose. Now I twitch like crazy, and have all kind of twitches small, large, etc. At first the large twitches bothered me the most but then I read that its the "fine" twitches to get worried about. Quess what? Most of my twitches are moving fron one side of the muscle to the other. When will this stop? I went to the docs, did one emg. Can I drop this? Or will it be like many people in here, that have been twitching for MANY years and still go to the neuro? (I dont say thats its anything wrong with it, but im comfused, some people told me, clean neuroexam and emg - you do not have als. But then of the other people go to the neuro all the time to do emg and neuroexams, is this our life?) As long as I twitch ALOT, have "fine" twitches, in all diffrent kind of places, I cant let this go? Are we bfs more likely to get als? How rare is this diases? Here in Sweden, its about 9 182 927 habitants. Ive heard about 4 people getting it(all women). Two "famous" people. When i told my father about my fear for als, he said "whats als?" he never in his 64 years heard of it (lucky him) Im confused....do you guys think that the twitching would bother you if you didn´t know about als? Are you guys hypocondriacs like me? Im really trying to understand. I also read people that been to the doc and they said; "Its all fine but if it gets worse you have to come back"? If it gets worse? F*ck I still get "fine" twitches in places I never had it before, some days I think I drop things more then I done before, some days I feel weak, Im always looking for atropy, some days I have pain. Do I have to wait a whild and then go throug the same anxiety again and do an new emg? Oh my god, plz share your stories and way of thinking.../Linda

 

[coty721]

When I wrote "how rare is this diases" I mean als. But if someone takes the time to answear I would also like to know how rare bfs are?

 

[papillon58]

i wish for any information that you receive on all of this as well--i know just how you feel-- some days i dare to feel good and now i read scary posts and feel badly-- i dont know if i should continue to visit this board...

 

[TompeteA]

Linda, You sound just like me, 1-1/2 years ago. The frustration, anxiety, inability to accept what our doctors tell us, none stop even worsening symptoms, it was crazy. You just kind of have to ride it out, unless your symptoms stop, you will probably end up back at a Neurlogists or two, I have seen 4 Neurologists and have had 3 emgs over the last 18 months, it is really hard to believe nothing sinister is going on. It may take a while, but you will get to a better place mentally, even if the symptoms persist. The best I can gather from what I have read, ALS hit about 1 in 100,000 people annually, maybe someone else has something different. If you have not already, check out the articles section of this web site about the Mayo clinic study, it was not a large study, but it indicates that people suffering from BFS are not more likely to develop ALS. Hang in there, just a warning, it may get worst before it gets better, but what you describe in your symtpoms is consistent with alot of people with BFS, including myself.