twitching for 12 years

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twitching for 12 years

Postby alwaystwitching on June 16th, 2012, 10:09 pm

I'm new here, however I have been reading posts as far back as I can remember, at times it was all that kept me sane. I finally registered on a particularly bad day when even my history of clean emgs couldn't keep me convinced. I need real people, who respond, to connect with, that actually live this (at times) life altering "non disease" disease.
I am a nurse, have seen it all, not a hypochondriac, just stressed to the max with bfs. Logic tells me I'm fine, but as random twitches or actually strong thumping hot spots hit ya in the middle of a great day, it sets you back. The face is intolerable for me and recently my Right jaw and right upper lip (in between lip and nose) have been like wild fire. Had clean emg of tongue a year ago...tongue the worst. Walked out carefree and happy then wham, set back...omg my face? from the jaw to the chin a "thumper" quite apparent and oh so annoying.
I too am looking for reassurance and fellow twitchers, a real person NOT the neuro who doesn't really understand how a great day can get turned around until you take the time to get a grip on the benign nature of bfs.
Its only human to get alarmed at these strange migrating twitches, spasms, cramps. I have had at least 5 emgs over 12 years all clean. i do have atrophy due to not using muscles for fear of triggering an episode, extremely brisk reflexes knees...thats scary. After exercise or even yoga my muscles really act up, I am never without a twitch, as I stated I'm used to them, all but above the shoulders, they immobilize me with fear, even though I am aware they are harmless, it provokes anxiety.
I have had this 12 years, a roller coaster. I take valium, small doses and it does seem to relax them or me? I can walk, run, stairs, use my hands, no clinical weakness so clearly... no als. I wish I had an answer to why some days the twitches entertain me and other days terrify me and I'm wondering if thats the cycle we all have in common?
My twitches started in my thigh one day 12 years ago and spread everywhere, once my elbow twiched for over a month NON stop, intense everyone enjoyed watching it but me... now everytime a fleeting twitch hits there I pray it burns out quickly.
12 years should be reassuring to anyone reading this, its true, if you're new at this it's frightening but I believe the neuro it's OK, I just want to talk to people who understand...my family, friends say "oh ya my eye twitches once in awhile too" and I know they don't get it!
I still entertain the thought of a new neuro, one that has bfs patients, mine specializes in emgs but said Im her only patient with bfs...Perhaps through this forum I will be able to find one. I live in Chicago. I only think of another neuro not so much for the workup, but just for the knowledge they can share regarding bfs.
Love to hear from someone, anyone who feels same. Hope anyone new to this can be reassured that it IS real but harmless, just need to be reassured and in the company of other twitchers once in awhile.
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Re: twitching for 12 years

Postby Yuliasir on June 17th, 2012, 2:33 am

Hi,
I have only 8 month with BFS and I feel aready how exhausting it is even without concerns for MND. it is anyway a muscle activity, so I become tired as much as if I was doing a heavy work. It can be painful and causes sore muscles. And it is distractive if it is fascial twitch (mine even make me sometimes enable to work - I am a translator and have to see clearly what I translate, but when the eyelid is really working as a shutter...well, then I had to take a rest!)

Great to see a person who lives with this for years staying positive.

I had noticed initially that my twitches came in 5 weeks cycle but then they decreased for month ot two ro three so I will continue to study myself and see if they would come back (they didl actually for the last three days). I noted also that fine buzzing or small twitches sometimes are even pleasant like stiing in the spa :) or having electrical massage... even on my legs and scalp... but not hotspot thrumps of course (I had them in a bicep for few hours yesterday, hello - in the morning all left part was sore, from neck to buttocks).
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Re: twitching for 12 years

Postby Lasszucken on June 18th, 2012, 7:06 am

Hi!

Yes, twitching is annoying and can scare you sometimes, but dont you think that after 12 years it's about time to just let the twitches twitch and stop bother about them?

I can indeed understand your wish to communicate with other people twitching, as others who don't 'suffer' usually dont understand how annoying it can be, but after twelve years you really should get over it, as you after twelve years also seem to have accepted that i wont kill you.
No offence, its just what i think.

Indeed you are welcome to communicate and share your thoughts with us.

Greetings,
Lasszucken
Twitching since about 1st of march 2012..
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Re: twitching for 12 years

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