Guess what....

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Guess what....

Postby raindog on March 26th, 2014, 6:04 pm

Its still not turned into MND :lol:

So i thought i'd put up my latest video just for giggles, and after 7+ years of this i'm still alive and kicking even with 2 not so clean EMGs

http://youtu.be/-FyIGNLZeas

Stay strong and keep smiling :wink:
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Re: Guess what....

Postby ShawnW on March 26th, 2014, 7:30 pm

That's awesome. Thanks for stopping by and letting us know that you are doing well.
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Re: Guess what....

Postby nrwtwitcher on April 17th, 2014, 4:45 am

thank you raindog for this video. I love your videos :D
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Re: Guess what....

Postby Xina535 on May 10th, 2014, 3:52 pm

Hi Raindog, thanks for sharing your video. I am also very happy that you are doing well!

I have to say, I have not had twitches like yours. Mine switch to different places within seconds, it is rare that I have twitches in one spot where I can even catch on video. Did you start out like mine and then did it get the way you have them now over time?

Also, you mentioned in the video comment:

Deep tendon reflexes absent at knee and ankle and Chronic denervation and motor neuropathy mentioned on 2 EMGs.

So you were diagnosed with all of that? It sounds very scary to me, but I have not had an EMG yet (I am too scared too, I am just a big scared mess, have good days and bad).

PS - you seem like you have very muscular legs! Do you exercise, and if so, does that make any of your symptoms worse?
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Re: Guess what....

Postby raindog on May 14th, 2014, 4:22 pm

Xina535 wrote:Hi Raindog, thanks for sharing your video. I am also very happy that you are doing well!

I have to say, I have not had twitches like yours. Mine switch to different places within seconds, it is rare that I have twitches in one spot where I can even catch on video. Did you start out like mine and then did it get the way you have them now over time?

Also, you mentioned in the video comment:

Deep tendon reflexes absent at knee and ankle and Chronic denervation and motor neuropathy mentioned on 2 EMGs.

So you were diagnosed with all of that? It sounds very scary to me, but I have not had an EMG yet (I am too scared too, I am just a big scared mess, have good days and bad).

PS - you seem like you have very muscular legs! Do you exercise, and if so, does that make any of your symptoms worse?


My diagnosis is PNH (peripheral nerve hyperexcitability) so more in the way of Neuromyotonia the defined muscles is probably down to the constant activity and the term is called hypertrophy and is common in lots of neuromuscular conditions. My neuro is no longer concerned as ive had this 8 or so years now and although its more painful now its has not turned into anything nasty. I dont work out just get plenty of walking and play crown green bowling at a competitive level at least 15 hours a week

Life goes on and that pleases me, so dont fret and waste precious time worrying you will be OK so stay strong and be positive.
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Re: Guess what....

Postby leaflea on May 14th, 2014, 5:12 pm

Raindog (or anyone else) -- Two questions --

1. do you know the difference between PNH and neuromuscular hyperexcitability?

2. do you know the difference between hypertrophy and pseudohypertrophy?

I can find little info about either neuromuscular hyperexcitability or pseudohypertrophy and am all done googling. But, I do think I have both and one thing I found is that pseudohypertrophy is common in neuromuscular hyperexcitability. And the 3rd... million $ question--- 3. What causes any of this bs?
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Guess what....

Postby raindog on May 15th, 2014, 4:51 am

leaflea wrote:Raindog (or anyone else) -- Two questions --

1. do you know the difference between PNH and neuromuscular hyperexcitability?

2. do you know the difference between hypertrophy and pseudohypertrophy?

I can find little info about either neuromuscular hyperexcitability or pseudohypertrophy and am all done googling. But, I do think I have both and one thing I found is that pseudohypertrophy is common in neuromuscular hyperexcitability. And the 3rd... million $ question--- 3. What causes any of this bs?


pseudohypertrophy is when the muscle is replaced by fat tissue and weakness is a common feature ...my muscles remain strong on no fat ....i do have axonial damage and a motor neuropathy mentioned on my EMG. neuromuscular hyperexcitability AND PNH will be the same as both originate in the Neuromuscular junction part of the brain and are often referred to Neurological/ ion channelopathies


http://en.wikipedia.org/wiki/Channelopathy
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Re: Guess what....

Postby leaflea on May 15th, 2014, 7:44 am

Thanks RD - just trying to make sense of all the nonsense that is bfs. My arms have changed texture and are much more fatty while my hands and feet are skin, tendons, and bones. No real weakness that I can tell. Middle back pain associated with quivering/trembling-like twitching shortly after lying down and first thing in the morning is my latest thing. We all seem just a bit different and yet the same. Good day to you!
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Guess what....

Postby Xina535 on May 15th, 2014, 9:12 am

Raindog - thank you for all of the valuable info!

Yes indeed, we have differences, but are really all the same. I have one new symptom every month, while another one goes away. Example: My hands are looking more tendon/bone/skin, while my arm weakness has gone away. I have just now started getting these myoclonic jerks, but at the same time, my leg muscle tension as been better.

Oh the wonderful mysterious world of BFS (including PNH, cramping syndrom, globus, etc etc etc).
:roll: :shock: :lol: 8) :cry: :wink:

Wishing you all well!
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Re: Guess what....

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