The Twitching Scale

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Re: The Twitching Scale

Postby Tohapane66 on June 19th, 2014, 7:29 am

Hi Garry

I relate to some of things you have here. The burning feeling, the joint and muscle pain. The latter particularly after exercise. The pain I get in left forearm, fingers wrist really sucks. I often get it from being on the PC and after swimming. My neurologist said the pain I was getting in left arm was possibly related to tendons and or tennis elbow. However,after a while I began to doubt this as the pain would come and go. I figured if it was something like tennis elbow it wouldn't be one day here then suddenly gone the next. I tend to think that it is all part of this same (bfs) alien that has taken over my body. I don't worry about it being anything troublesome when it flares up, it just frustrates me.

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Re: The Twitching Scale

Postby readytocheckout on June 19th, 2014, 7:43 am

Tohapane66 wrote:My neurologist said the pain I was getting in left arm was possibly related to tendons and or tennis elbow.


Hi Tom

My neurologist said that my forearm pain is a soft tissue problem, and my osteo said it's tendon or tennis elbow although I don't play tennis but that pretty much describes the symptoms apparently. So I have to go with both those professional opinions. Trying to type right now feels difficult in my right forearm. Thanks for replying, good to see that you're not worried (unlike me).

Cheers
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Re: The Twitching Scale

Postby Tohapane66 on June 19th, 2014, 8:09 am

Hi Garry

No problem. I was worried when it first started happening. Pain was bad - sometimes still is. My neurologist felt all around the arm. It was highly painful when he did so and he certainly triggered some finger movements. He thought it was soft tissue or tennis elbow. He sent me off to a muscle skeletal guy who treated me for tennis elbow. However, I found his treatment didn't do much. After awhile I found that certain activities could trigger the pain, or that it would simply come and go. Thus I have become accustomed to it now.

Btw many activities can trigger tennis elbow, so I was told. Simply resting your elbow on a table can do it. I know I was guilty of that. I found that when I was stressed a little I would lean with elbow on table and hold my head. Happens when you have a sit down job with long hours.
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Re: The Twitching Scale

Postby wookiette on June 19th, 2014, 1:41 pm

I should be lucky because I get only 5 a day i can feel i think. It's today the birthday of the beginning of my focus on it, so i hope it could disappear. i have no hot spot. Today i had twice in lelt hand and i hate twitch in hand. But thigh and biceps are the other most located place. I suppose if i think about it, it will increase, so i try not to do that. This is the only website i consult about twitching. i already get tremors in hands too and maybe beginning of cramps, but they could have been only sensation because this appeared when i feared having cramps.

I wonder if bfs isn't a manifestation of hypocondrie (for me i'm thinking that's it). In the french forum, someone do a surveey about hypocondriac behaviours and focuses on twitching and it appears almost everybody said he was hypocondriac ...
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Re: The Twitching Scale

Postby wookiette on June 19th, 2014, 1:42 pm

Sorry for my english, i'm afraid it is plenty of grammar faults ..
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Re: The Twitching Scale

Postby Tohapane66 on June 19th, 2014, 7:07 pm

I never had much to complain about in my life health wise. And I'm getting into late 40s. Pretty much the only thing that has ever kept me from going to work has been a broken leg.

But this bfs is real and and at times pretty debilitating. Maybe there are some people who have hypochondria who have bfs, but I seriously doubt their hypochondria or anxiety caused it. If twitching was owing to anxiety or hypochondria then this really isn't bfs. I think this is well documented and understood. Indeed if underlying anxiety is the cause of twitching then the prospects for eliminating this twitching are very good.

Ask any reasonable neurologist and they will tell you bfs (and the variety of related peripheral nerve hyperexcitability) is real. I would very much like to put any one who labels this as something of the mind (hypochondria or whatever you want to label) in my place just for one day. Their tune would definitely change. I would like to see their anxiety levels. For some with this condition I think it must take extraordinary mind power to overcome.
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Re: The Twitching Scale

Postby Cobber on June 23rd, 2014, 12:34 am

I twitch 24/7 in my left calf. Minimum 10 maximum 100 visible twitches per minute all day and night for 17 months now. I get them elsewhere but it's not as constant as the calf........in fact elsewhere it's nowhere in the same league. The left toes went for about a month and also my stomach and shoulder join in for a few hours once in a while. But the calf just keeps popping away non stop. It used to freak me out and drive me nuts but I got used to it after a year following my EMG/MRI and damaged spine diagnosis.
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Re: The Twitching Scale

Postby raindog on July 1st, 2014, 10:53 am

Whats the biggest number trillions or zillions :lol:

Seriously dont think ive had a second without one.
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Re: The Twitching Scale

Postby Nightfly on July 1st, 2014, 1:27 pm

Every second 24/7 in both feet. A couple a minute in the legs. Rest of body varies but hands are the ones I find the most annoying (constant twitch in side of hand). Year and a half in and don't visit this site often (usually when It gets me really down). Still think Ive got of lightly compared to lots of others on this website.
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Re: The Twitching Scale

Postby Xina535 on July 2nd, 2014, 5:44 pm

Hey, what's this Tegretol medicine you guys brought up? I have'nt googled (trying to stay away), but this is the first time I heard if it. Does it help twitching, or PNH stuff? I wonder if I can get it in Germany. No doctor had given me anything for my twitching.
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Re: The Twitching Scale

Postby Yuliasir on July 3rd, 2014, 12:57 am

Xina,
tegretol is an anti-epileptic drug. As it is supposed that BFS may accompany with the epi-like focus in the motor brain, some antiepi drugs are considered to be useful for BFSers. It laso has mild normotymic (sedative but not sleeping) effect and is known to decrease agitation.
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Re: The Twitching Scale

Postby Xina535 on July 3rd, 2014, 3:02 am

Thanks!! I will see if I can find that here or similar (the next doctor visit).
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Re: The Twitching Scale

Postby Yuliasir on July 3rd, 2014, 3:52 am

some of us also use carmabazepine and/or gabapentine - which also are antiepi drugs. They also have mild antianxiety properties for which they are often used in BFS.
But effect is usually rather mild.
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Re: The Twitching Scale

Postby crotwich on September 9th, 2015, 7:49 am

I challenge you Matt (I hope you are still hanging around here) 8)

https://vimeo.com/135509543
https://vimeo.com/138175807
https://vimeo.com/135518789

Anyone else wants to compete (except for Raindog maybe)? :P :)

*************************************************************
Summary:
- Noticed twitcing on 11th July 2014 in my calves
- Constant muscle pain in my thighs
- Widespread pinching, pricking, itching and other paresthesias
- Intention tremors and jerking
- Hyperhidrosis and hypersalivation
- Occasional cramping in feet
- LAB tests from one week ago: all normal (including CK) except for constantly elevated creatinine in serum and urine. Some results still pending
- Clinical and EMG done one moth ago by a neuromuscular specialist. 20 muscles tested this time (including one bulbar and T10 paraspinal): all clean
- Diagnosis: still BFS, but possible PNH/CFS. VGKC antibodies were negative on October 2014, but I need to repeat that test

All the best,
Cro
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Re: The Twitching Scale

Postby misterjuanperalta on September 9th, 2015, 4:55 pm

You and I are exactly the same, even the onset month and year are the same. Symptoms the same as well. Pretty cool I guess.
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Re: The Twitching Scale

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