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No relief

I am a 53 yr old female.I have been suffering with neuropathy for about 13 yrs. One dr first diagnosed me with CIDP. My new doctor does not agree because I don't have any signs of weakness in my extremities.  My symptoms are feelings similar to what you'd feel when someone scratches their nails down a chalkboard.  They started in my left foot and shot up that leg.  It has spread up my torso, head, face, and right extremities. Medical tests show that there is definite nerve damage, predominant in the left side of my body. There is a pattern of flare ups and remissions that last for months.  When I am in remission, I feel healthy and normal.  When my condition flares up I experience bruising  (ITP), my arthritis and vertigo act up.
I get cold spots on my  left leg.  I lose hair.  
  I have been on several medications trying to keep these symptoms in check ... prozac, buspar, elavil, topamax,   Trileptal, and I've had immune globulin IV treatments.   The last three meds worked for a while, but not anymore. Steroids  cause hysteria in me.  Since stress is a trigger (during a flare up)  my neurologist wants to try buspar.  Have not done that yet.
My sister is completely bedridden with polyneuropathy.
   When this gets bad, even my clothes irritate my body and I shake.  My insides feel over stimulated. My skin feels like it needs rubbed or scratched. My nerve endings start to feel sore.   Pain meds don't help. Any outside stimulation aggravates it, both physical (vibrations riding in a car) or external stresses, (paying bills, or watching a suspenseful movie, stressful conversations, etc.)  It really interferes with my life.  Sometimes I stay away from everybody, to avoid it getting worse.
     I really need some relief.  I live in Pgh  I was wondering if it might behoove me to try the Cleveland Clinic?  Do you have any advice for me?
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Avatar universal
I feel for you as I have the same symptoms but mine dont leave my feet, scratching nails down a chalk board sensation that is getting so bad i think im going to lose my mind! My docs think its in my head!! its not! and now I know for sure! I am not alone!
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Avatar universal
I'm sorry; I posted this in the wrong place and I posted it twice! New user. I'm sorry guys!
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