I am looking for someone who specializes in a relatively rare condition called Peripheral Nerve Hyperexcitability... and more specifically either Cramp Fasciculation syndrome or Isaacs syndrome (neuromyatonia).
Chances are it will be either a neurologist or autoimmune specialist as it is considered by most to be a neuromuscular disease caused in most cases by autoimmune issues.
I am looking for someone to help me too Mark. I have been suffering a long time with some kind of muscular disease...and they dx'd me w/Addison's disease, but just went to see a new Endocrinologist and he told me, he didn't think i had it.
He did find however, my Thyroid enlarged and took...i don't know how much blood, but i hope he can find what this is. HE does at least, have a good bed-side manor and seems to care.
I can tell u that my skin hurts, when it is touched and u sure can't grab me or pat me or i will scream inside. I have got good at hiding a lot of my pain, but it is not gone...yet and it is getting harder to do. I have these horrible burning feelings and cramping muscles all the time too. I will itch all over and my skin will feel tight...on me and will experience some breathing problems. I can sum a lot of it by saying...it is heck, but much worse.
Where do I begin?? Both my big toes get yanked — and none want to bend. I always feel as if I have cement hardening in my veins or better yet, feel the pain run down a vein...from my ebow to my wrist.
My body feels...as if, it s in a wine vat being crushed, pressed and twisted.
I used to be like a hummingbird flitting about too and fro … now I’m more like a turkey in that I flapped my wings but don’t get very far.
I wake up and feel as if I’m wading through a muddy swamp.
My internal timeclock took an external vacation.
Now that I’m numb from head to toe I’m a true numbskull....and the numbness is horrible, in my face. IT stays that wat.
I have a continual DETOUR sign in my brain...and sometimes, feel disconnected.
At times, I feel as if I have a motorcycle helmut on too tight...inside my head but over my skull — and it has a smoke-colored visor over it that sometimes clouds up...because my eyes have blurry spells. I look through that visor, then through my eyes to the outside world (no wonder I’m slow to process information).
Umm … what were we talking about? (memory of a scarecrow)
I really hope we can find that perfect doc...to help us. So deperate...I wrote to "The Docors's" explaining what i am going through...i must be dreaming if they get back to me.
Good luck to u...i wish u the best, just in case we don't get to talk again.
God Bless always...Karen
A strange thing to say I suppose. But there is something strangely comforting to know that there are other people experiencing similar things. I really so have days when I wonder if Im just a nutcase and its all in my head....
My Doctor is lovely, but I do also wonder if he just thinks Im making it all up sometimes....
My symptoms are a little different from yours, but the numbess and tingling, the weird pressure, burning sensations, itchy skin (I have actually scratched skin off sometimes in an effort to stop the itchiness)
I also experience muscle spasms, which are the only symptom that I have found any way to address: I take massive amounts of Vitamin D. It makes a difference but totally stuffs up my body clock and sleep is now a thing of the past :-(
Do you also feel as if your themometer is broken? I am always cold. I live in a mild climate, but even on days when everyone else says theya re warm I am wearing several layers. Its not lke menopause where there are hot and cold flushes, (Not there yet...almost looking forward to it)I just struggle to get warm...
Anyway....thanks for you post. It definately made me feel a little less crazy.
I have muscle pain, twitching and cramping especially at night. My feet go between numb, burning and cold. I wake up with itching all over. The doctors cannot figure it out. They act like it's all in my head. I hurt all the time. I have been to many doctors including neurologists, rheumatologist, primary and psychiatrist. They have no answers. I thought it might be low thyroid but my lab work is normal. I take Cymbalta and Gabapentin.Sometimes my legs turn dark purple. I have to put heat packs on my feet to go to sleep even in the summer. My whole body is painful to touch.
I have a tremendous neurologist (Dr. Lisa Hobson-Webb) who specializes in autoimmune disorders and diagnosed my PNH using a state of the art EMG testing protocol. She is at Duke University in Durham, NC. She may be able to suggest who you might turn to in your locale.
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