Chronic Twitching: 18+ Months

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FatFatGuy

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Hi everyone, I've had 24/7 twitching in both calves, sides of my feet, thighs, above the knees, sides and stomach, arms, eyelids for over 18 months now. I sometimes get dizzy, my tongue twitches and I get the funny feeling too, lip twitches and all the rest. My feet sometimes fall asleep. When working out I cramp easily in my forearms and ham strings. I've tried no caffeine, no sugar and every other Drug/natural herb I can think of to try and get rid of this or take the edge off for 18 months now. I went to the neuro 6 months ago and he conducted a complete neuro exam including a (needle EMG) and it all came back normal. I was diagnosed with BCFS. I am supposed to go back next month for a LAST CHECK. Noticed how I've said last check! I have no signs of weakness and everything is the same as when I first noticed things starting to happen 18 months ago. I do know that It first started in my eyelid and in the webbing of my left hand and moved to other parts of my body and it was accompanied by hot spots. I have one bit of advice to those in here LIVING on this board. Go to the neurologist and get a (NEEDLE EMG)!!!! Stop looking at crap on the internet including the "A" word and driving yourselves insane! If you get the exam and needle emg and the doc says "hey...looks like you have BFS or BCFS mr/mrs patient" then get on with your life! I've only had this for 18 months but I can guarantee you that the folks in here who have had this for years will tell you the same thing. Live your life and deal with the symptoms. Does it suck? absolutely it does and i'm right here with you but you have to move on and get living or this will drive you nuts. My father in law died of *** a year ago this Aug 30th. In his case from the time he was diagnosed he was gone in a year. have personally seen his fasics and it looks nothing like BCFS. Plus the last thing to happen to you is the fasics because the muscle is already toast. And if that has happened to you, you should be in a wheel chair right now.Here is my advice:1. Go see a board certified and highly recommended Neurologist2. Make sure he/she gives you a complete physical and A NEEDLE EMG3. If he/she says you have BFS or BFCS ask to be seen in 6 months for a LAST CHECK4. Upon getting/accepting it as your last check, accept what your neuro has told you and get on with your life!5. Stop going on the *** boards and making yourself think you have the symptoms! Trust me if you had it you would know!6. Get to the gym and make a lifestyle change.7. Come in here only to see if there are advances in medicine or home remedies.8. Get into the mind set that this is BCFS or BFS and deal with it like everyone else in here.
 
My 1 year exam (2nd and final Exam) is tomorrow at 4pm and I am very excited to see the Neuro! I have noticed changes in myself but they are the same symptoms that everyone else in here seems to have. I am starting to get the internal tremors and bouts of dizziness. As far as the fasics I only really notice them at night when I lay down, especially after being on the boat all day (U.S. Coast Guard boat driver here) and if I am sitting at my desk. I also seem to cramp easily now. But the main thing is I am ignoring the symptoms and keeping it out of my head. I had a ton of stress when this first started happening but now I know better and my stress (BFCS related) anyway is gone. Due to the nature of my work I really cant take anything that will alter my motor functions, besides I have already tried every drug and herb known to man and nothing works. I actually canceled my appointment last month with my PCP and figured there was nothing he was going to prescribe to me anyway. So I am just hanging in there patiently and checking these boards on occasion to see if there are any break thru's in medicine. I just hope that other people who come in here read these boards like we have and it helps them understand that this is not disabling or fatal. To those reading...this syndrome is more of a pain in the #$ than anything! After you get over the fact that this is an annoyance more than anything you can finally get on with your life.Mack
 
what should i use as my "start date"-- the date i began twitching in my calves ( several months before ) or the date i began my all over twitches? or the date i first saw my neuro ? for my one year mark??? what do you all think?
 
That is interesting, since neurologist would tell you, that there is no difference between ALS and BFS fascics. Both are the same but with rapidly different ethiology. The main difference is in duration and frequency, when ALS related ones are mostly constant and - just read it in ALS study - tend to be more frequent in one specific location.Honestly I do not understand your fears (you who twitch more than few months), patients who firstly noticed only fasciculations were paralyzed in affected muscle groups pretty early - from what I remember, denervation lasts for 3-4 weeks). And do not forget, that most neurologists have seen only few cases during years...so do you think you all here are rare unlucky ones? I doubt..and do not forget another fact: stress releases magnesium from your body and lacks of Mg leads to tremor and twitching. The more stressed, the more twitches. Its *beep* blind circle. And at the end: what is worriyng good for? If it was ALS, nothing would help us.
 
Thanks for post. But it is one thing that worries me. Many people tells me clean emg and neuroexam - no als. But you say "Last check in 6 months after the first", and I hear all the time people on this forum that have had this for years and still go and do emg and neuroexams. Why? It was so terrible for me to do the emg and see the neuro, do I have to this to be sure? Cant I rule out als after my first and only emg and neuroexam?Im scared and comfused/Linda
 

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