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Ten Years Of Twitching

PostPosted: March 1st, 2014, 5:04 pm
by Slavin Balen
Dear All,
On the first of March 2014 is exactly ten years since the appearance of the syndrome for which I later found out that it has its name: Benign Fasciculation Syndrome. After Many searches and test and a lot of specialists, doctors, seven EMNG, CT, MRI, ELISA etc I realized that i certainly do not have a terminal illness. To this day no one is sure what I have but most likely it is a system disorder caused by Lyme disease and increased stress in those days. The point is that I do not have ALS. Fasciculations are much less than at beginning, very rarely occur and when occur it is in legs (mostly in calves).
I take Magnesium on a daily basis (up to 300 mg) and vitamin B and Zinc as well.
When I do not take Mg for two to four weeks I get cramps in my legs.
To all: be firm and do not be afraid. I give you an example to everyone who has diagnosis of BFS remains alive.
I do not go over to this site because I have other things to do. I still work as a DJ at a radio station as well as ten years ago.
All private question send to my mail: [email protected]

Re: Ten Years Of Twitching

PostPosted: March 6th, 2014, 6:04 pm
by edado69
Nice to hearing from you again!

Re: Ten Years Of Twitching

PostPosted: March 10th, 2014, 6:00 am
by PetrifiedGuy33
I can beat that - 20 years of twitiching

But I don't twitch that much these days, indeed for most of the twenty years my twitching was hardly noticeable

I seem to get occassional times when I twitch more, usually associated with stress/anxiety

My worst twitching times were when I was really worried about something sinister and was on here alot a few years ago

So I don't know what causes my twitching and I'm not sure what I have, but it has absolutely zero effect on my qualify of life

I have learned however, that I do have a pretty bad case of health anxiety and as soon as my fears of some muscle wasting disease pass my mind takes a break for a while and then finds some other unusual tenuous symptom to obsess and worry over - that's my problem!

Re: Ten Years Of Twitching

PostPosted: March 16th, 2014, 9:44 am
by RobJ
I'm 20 plus years myself, and it never goes away.

I have those moments year to year, sometimes years go by with very little twitching, then whammy! It's back with a vengeance and it's always something new that makes you wonder? Long timers will know what I mean.

Good luck!

Re: Ten Years Of Twitching

PostPosted: March 18th, 2014, 8:47 am
by UFGatorGuy20
So all you long timers... any symptoms besides only twitching? Pains, aches, tightness, cramps, tingling, numbness, fatigue?

Re: Ten Years Of Twitching

PostPosted: March 18th, 2014, 9:46 am
by MarioMangler
Of course. Nobody here has ever had only twitching. I can guarantee you that nearly everyone in the history of this board has had most if not all of those other things.

Re: Ten Years Of Twitching

PostPosted: March 19th, 2014, 8:51 am
by Slavin Balen
Only cramps, very rare, increasing when skip Mg on monthly basis.

Re: Ten Years Of Twitching

PostPosted: March 19th, 2014, 2:49 pm
by UFGatorGuy20
MarioMangler wrote:Of course. Nobody here has ever had only twitching. I can guarantee you that nearly everyone in the history of this board has had most if not all of those other things.


High five! I assume that's the case. I figure we are all on a scale somewhere in the PNH - Fibro world. Symptoms overlap so much...

primarly twitching = BFS?
primarily cramps = Cramp Fasciculation Syndrom?
primarily pain = Fibro?
primarily fatigue = Chronic Fatigue Syndrom?

I find myself dealing with twitches, cramps, aches, pains, some tingling and numbness / thick skinned hands. Less fatigue. I always feel refreshed each morning and can workout / run basically as hard as I want. There are new consequences though!

Re: Ten Years Of Twitching

PostPosted: March 19th, 2014, 3:56 pm
by MarioMangler
If it helps, I have always believed that BFS and fibro and PNH are all the exact same thing. I think they are different intensities but they are on the exact same spectrum. In fact, in many ways we are the lucky ones because we BFSers got the weakest version.

Re: Ten Years Of Twitching

PostPosted: March 19th, 2014, 4:00 pm
by keomagnes
I find myself dealing with twitches, cramps, aches, pains, some tingling and numbness / thick skinned hands. Less fatigue. I always feel refreshed each morning and can workout / run basically as hard as I want. There are new consequences though!


When did you start to feel all those other symptoms (beside the twitches)? Did all start together?! What kind of consequences are you facing?!