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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?
2 Responses
Avatar universal
My mother has peripheral neuropathy from cancer treatments, she is also suffering from a number of things you are. Her doctors put her on a bunch of medications to help her and she does feel better than she did. I will tell you as much as I know. She takes cymbalta for nerve damage and pain and it helps with a number of things you listed vibrations vertigo etc, is also a anti depressant and it gives you energy. She is also taking neurontin for nerve pain as well as vicodin when it gets really bad. I hope this is some use to you.
Avatar universal
Thank you for your response.  Although I am sorry that she suffers, it's nice to know that I'm no the only one with this crazy zing thing.  I have never tried neurontin.  Cymbalta makes me feel drugged!  Everybody is different, I guess.  Someone mentioned lorazapam and I do take that.  It keeps things a little calmer.
   I am embarrassed because I posted this thing three times.  The first time was to this forum but the second time (s) I was trying to post it to the medical professional forum ... and it posted here instead (it said that they had received the quota for questions for that day.)  So please, everybody ... overlook the repeated postings!  I'm going to try again today.  I HOPE IT DOESN'T POST HERE AGAIN!! Thanks again, Misha!
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