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Old 10-09-2010, 08:48 AM #21
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Hi

I have been seen at the utsouthwestern by a neuromuscular doctor and he did emg/ncv and didnblood work for vitamin d and wilsons disease and has dismissed This as neuromuscular and said he has no clue!!

....am seeing neuromuscular specialist and he is with Baylor. He is good and docent mind runnin whatever test.
Neuro muscular ??
Are you sure?
Why not a neurologistspecializing in neuropathy?
Or both !
Unless you get the right kind of doc,
you can run in circles forever.
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Old 10-09-2010, 09:23 AM #22
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I have read recently that the "new discipline" is incorporating peripheral nerve problems into the specialty "neuromuscular". This is happening in the teaching hospitals first.

Myasthenia Gravis is now being seen by neuromuscular doctors, too. It appears the Neurologists want only the CNS type disorders, the biggies.

Tulips has alot of muscular spasms... which suggest neuromuscular also.
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Old 10-09-2010, 09:53 AM #23
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I have read recently that the "new discipline" is incorporating peripheral nerve problems into the specialty "neuromuscular". This is happening in the teaching hospitals first.

Myasthenia Gravis is now being seen by neuromuscular doctors, too. It appears the Neurologists want only the CNS type disorders, the biggies.

Tulips has alot of muscular spasms... which suggest neuromuscular also.
That has been my experience at the Boston teaching hospitals. The physicians who note a "clinical interest" in peripheral neuropathy on their on-line profiles are those that specialize in neuromuscular disease.
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Old 10-09-2010, 11:21 AM #24
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Well that's the problem. In 2006 they said you need to be seen by neuromuscular cause o your twitching and cramps and spasms. So I did and if u see their notes they mention parathesia and mayalgias!!!

I really don't think they understand me or I don't explain well. I don't know
I tell them everything from sensory symptoms to cramps.

Doctor also thought Isaac syndrome but emg/ ncv and vgkc was normal. So this time I really forced this issue with stabbing and burning and he said sounds like sfn and let's do skin biopsy.

Been to 4 neurologist so far. This is the first guy at Baylor that says neuropathy.
He ran paraneoplastic panel and that was normal.

I don't know just feels like they don't listen. I have said so many time it was always sensory stuff then cramping and twitching happend.
I think along the line muncramping became so strong that that's what became the topic and confused doctors too.
Especially this flare cramping got web worse. Especially is ribs and back and stomach and can't sit
In a good position.
My spasms feel like pulling. I don't know if thats in neuropathy but I can feel a pulling sensation.

I think that's what the doctor one time said he is totally confused.. There are so Many symptoms

To me if a person has twitching sure they can have cramps or burning. It's all nerd related so why cant multiple thins happen.
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Old 10-09-2010, 11:27 AM #25
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Mrs D that's another thing in notes it says seems like hyperexitabilty syndrome of the nerves. Like neuromytonia or isaacs. The doctor at ut southeastern even said it could be benign cramp fasiculation syndrome!!

Which is garbage!! When they dont know what's going on.
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Old 10-09-2010, 11:40 AM #26
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I recently saw a brand new neuro and when she saw my records if seeing a especiList in teaching hospital she said oh if they can't figure it out then I can't either!
I was shocked!!
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Old 10-09-2010, 12:32 PM #27
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Well there are symptoms only I can feel like the stabbing and etc.. But if you were to put your hand on my calf you will feel the nonstop activity of muscle jumping and twitching and flickering. You can see it to. It's like worms under my skin. Xonstant movements like this is all over too face and all.
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Old 10-09-2010, 01:47 PM #28
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My stabs turn into feeling twinges of cramps and just like migrating stabs come and go so does this! I getthen under my arms too ( soo painful)

I want to ask if this is like sfn. My arms feels like they are tearing. And even movement makes the sensation worse. It's like extend tightness and burn and I can't touch one arm with other or it gets worse.
Every day is different. I even have th twitching in my stomach like baby kicking.
And can induce it by sneezing.

Sorry for writing so much. It's almost like therapy right now! I feeli like a ticking time bomb and in soo much pain.
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Old 10-12-2010, 08:02 PM #29
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Red face Tulips........i can relate!

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Originally Posted by Tulips View Post
My stabs turn into feeling twinges of cramps and just like migrating stabs come and go so does this! I getthen under my arms too ( soo painful)

I want to ask if this is like sfn. My arms feels like they are tearing. And even movement makes the sensation worse. It's like extend tightness and burn and I can't touch one arm with other or it gets worse.
Every day is different. I even have th twitching in my stomach like baby kicking.
And can induce it by sneezing.

Sorry for writing so much. It's almost like therapy right now! I feeli like a ticking time bomb and in soo much pain.
Tulips.........I can relate to so many of your symptoms, almost all of them actually, I have baby kicking in my abdomen, upon wakening in mornings, I have electrical worms in calf of leg and muscle twitching. Along with stabs and pricks all over face, scalp, every other part of body, every second. Sometimes burning, like someone is putting a hot spike in a body part. Water running down leg feeling.

I had 2 EMG's a year ago.......came out ok, very surprised.
I am now going for skin biopsy to confirm Small Fiber Neuropathy.

Dr say benign muscle faciculations are cause of my twitching, seems such a coincidence they would arrive along with all these sensations. Wondering if motor is involved but didn't show up last year on EMG......... would like another.

I do not have weakness or gait problems, do you?

Are you on meds? I am on 1200 mg. Gabapentin/60 mg. Cymbalta.

You used the word migrating and said yours gets worse with movement. Mine does at times, but will happen without movement also.

Look up Wartenbergs Migratory Sensory Neuropathy. It really sound like it may be us!

Yes, writing is therapy for me too!
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Old 10-12-2010, 09:44 PM #30
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Hi invisible

Sorry you suffer like this too.

I have it with and without movement too.
I take baclofen as needed and 2 mg Valium for breakthru. I have tried lyrics and no help.

My emg clear and ncv clear except carpel tunnel.
Have you liked up Isaac syndrome and had blood done for it. Blood test is called volted gated potassium channel. Or vgkc.
I tested negative but it's a rare thing they don't check for.

I don't want to take these mess so scared of them !!
Do you have tremors internal like u are shaking but I have external
Now too. Especially if I get startled I shake internally. Another this is I am getting more of jerks
(myoclonus) I alway use to as falling asleep. U know like u fell when u falling asleep. But now if I just close my eyes and in not so falling asleep yet and something will jerk a bit. But at times when awake and sitting my leg ir angle will jerk a bit. Nit hard a bit.

So I feel some if it is like movent disorder. But all I these things overlap each other and one can have tremors in so many things that makes it so hard to diagnose.

I hate the spasms in my throat and constant state of tightness that when there it clicks and makes sound when I swallow .

Tulips
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