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Offline ShawnW

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Re: Four months this Monday
« Reply #20 on: May 02, 2014, 11:27:07 PM »
Shawn, that's pretty funny. Hard to not focus when they're so bad.

I hear ya...wish I could take my own advice.  I will say with every passing day I grow less concerned about them.
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Offline Nk904

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Re: Four months this Monday
« Reply #21 on: May 03, 2014, 12:03:47 AM »
Shawn or anyone, when you stretch your big toe out below your other toes, does it sort if cramp up and take a while to re align with your other toes? Mine do. Self induced.
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Offline ShawnW

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Re: Four months this Monday
« Reply #22 on: May 03, 2014, 05:29:05 AM »
Shawn or anyone, when you stretch your big toe out below your other toes, does it sort if cramp up and take a while to re align with your other toes? Mine do. Self induced.

Not specifically with my big toe but have had this with other muscle groups.  It's merely a result of hyperexcitability.  We know your nervous system is hyperexcitable.  That stuff comes and goes for me depending on my sleep, if I have been self testing that group of muscles. caffeine, stress etc.  No reason to believe that is an "ominous sign".
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Offline Nk904

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Re: Four months this Monday
« Reply #23 on: May 03, 2014, 02:00:00 PM »
Yeah Shawn, it's worse when I keep doing it. I never have cramps unless I do it myself. Twitching is insane today in the kneecaps too!
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Offline ShawnW

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Re: Four months this Monday
« Reply #24 on: May 03, 2014, 09:33:37 PM »
Yeah Shawn, it's worse when I keep doing it. I never have cramps unless I do it myself. Twitching is insane today in the kneecaps too!

Yeah we are crazy like that...at least we can be crazy together :)  I can elicit cramps and twitching in my feet...can squeeze my eyelid to get it to go off...crank my arm a certain way and get it to twitch and cramp.  So much wasted time on this nonsense.  Life is too short to make ourselves miserable.  When it's our time...it's our time.  Not really anything we can do about it.  But, we can choose to live for today.
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Offline Nk904

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Re: Four months this Monday
« Reply #25 on: May 04, 2014, 02:54:12 PM »
So how's bad is your twitching Shawn?
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Offline ShawnW

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Re: Four months this Monday
« Reply #26 on: May 04, 2014, 03:11:17 PM »
I can get my eye to go off any time I blink too hard or sneeze...but overall they have decreased with time.  I started back in Jan with just the index finger, then all over my body...legs...arms...back...face...eyes ...feet...stomach.  I was a mess...jelly legs, couldn't lift my left arm for more than a few seconds without it getting tired...cramping both feet...both hands...sometimes my arms.  My partner is a neuro and told me to chill out my exam was normal.  I didn't believe him, got a second opinion from a neurologist who did nerve conduction and EMG (normal) and basically told me the same thing.  Since then I have slowly gotten better.  I would say I twitch 10-20 times a day that I notice...now.  But, it was much worse.  The cramping comes and goes but is better as well.  I started weight lifting again...and have put on muscle and gained strength.

It was a bad cycle...even though I'm a physician I knew only the bare basics about the disease that won't be named.  How I was trained was that if twitching is isolated...no atrophy, no weakness...normal neuro exam...don't pursue.  If one of those is abnormal refer to a neurologist.  But, as I read more and familiarized myself with a rare disorder everything got worse until I found BFS...which honestly I had never heard of.  The self testing, lack of sleep, 24/7 anxiety just made everything worse until the cycle was broken.  I'm on the mend...not completely better...still not completely convinced...but better.
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Offline Nk904

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Re: Four months this Monday
« Reply #27 on: May 04, 2014, 03:40:54 PM »
See if have twitching in both calfs, feet and thighs occasionally. Normal neuro exams three weeks after twitching and I haven't noticed any atrophy or weakness. So, should I not pursue this?
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Offline ShawnW

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Re: Four months this Monday
« Reply #28 on: May 04, 2014, 06:54:51 PM »
See if have twitching in both calfs, feet and thighs occasionally. Normal neuro exams three weeks after twitching and I haven't noticed any atrophy or weakness. So, should I not pursue this?

That's between you and your docs. 
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Offline Nk904

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Re: Four months this Monday
« Reply #29 on: May 04, 2014, 07:25:51 PM »
True but I'm saying based off of what you said.
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