[QUOTE=Tulips;704049]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 .





No, I haven't been tested for Isaac Syn., I will request at next visit.
I did some reading on it, can't see any sensory symptoms involved though, only muscle.

You do seem to have many of the symptoms, but you tested neg, so can't be.

What about Myasthenia Gravis? Have you been checked for that?

Did you have a skin biopsy for small fiber neuropathy?

Internal tremor has been a secondary problem for me, no jerking though.........went to movement disorder specialist to check for Parkinson's......maybe another option for you to look into.

These are just suggestions, as I have been investigating all of this for a year and a half now, very frustrating to say the least.

Yes, you are right, many of these symptoms do overlap in various diseases.

Hi

I just had blood work for myasthenia ( normal)
Just had skin biopsy three weeks ago but results come in November.

I isaac can have sensory. If u read in there support site they talk about it.

I asked to be seen by movement specialist but my doc said no need!

Will call him again.

Face buzzing and twitching and sharb knife and jabs and crampsss oh my.

Same in scalp and eyes.gives migraine . I even get it inside throat.

Anyways what does it mean If it's intermittent.
That my throat tightness and all the nerve pain will come and go and when here it's hard to swallow.

Tulips

Invisible
 

Hi

I reAd up on Wartenbergs neuropathy. Sounds like me when I can make the neuropathy fire up ten times more in my arm when I bend my neck down and even in legs. Always thought that was wierd. It literally can make the tearing worse and if I bend at hips that would in legs.
That's what I said to neuro every movement makes it worse.

So ya who knows again it's a rare thing.

When is your biopsy.
Do u have it all day or off and on or it migrates one hot spot to other.I have it all over all day just changes in intensity. But some says it stops a some areas.