Is there relief?

[terryd218]

I am a 53 yr old caucasion female.  I have been suffering with some type of neuropathy for about 13 yrs.  I've had 2 neurologists (because of a move).  The first one diagnosed me with CIDP. but my new dr. does not agree because I don't seem to 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.  Over the years they have spread up my torso, head and right extremities.  I had a test done with electrodes attached to  my body and there is definite nerve damage more predominant in the left side of my body. My symptoms seem to have a pattern of flare ups and remissions that last for months.  When I am in a remission, I feel healthy and normal.  When my condition flares up I experience bruising for no apparent reason (ITP), arthritis (fingers, tennis elbow, and knee trouble)  I have IBS, vertigo, and I get sick easily. I also have a couple of cold spots on my lower left leg that can be felt by the hand as well as my leg.  These things seem to plague me when I'm in a "flare up."  Oh, and my hair falls out, but I'm not sure if that factors into this.  I also have a diagnosis of Major Depressive Disorder for which I am on Welbutrin -long term.  My mother is diabetic, my older sister is completely bedridden due to some type of neuropathy which severely affects her motor skills and more. I have been on several medications trying to keep these symptoms in check. I'm not sure if I can remember all of them, but ... prozac, buspar, elavil, topamax, Trileptal, and I've had immune globulin IV treatments. I've tried massive doses of B vitamins with no result. I cannot take steriods because they cause hysteria in me. The elavil, topamax, trileptal and IV treatments worked for a time, but the neuropathy seems to have broken through these drugs.  Since stress seems to be a trigger (only during a flare up, I can deal with stress and life in a remission)  my neurologist wants to try buspar, but ... I seem to think that I had a bad experience with that drug, but it was in the beginning of all of this ... can't remember the specifics.  I don't wanna mess around with this.  It gets very bad.  It gets to the point, that even my clothes irritate my body and I shake because of the "pain," if that's how you want to term it.  My insides feel over stimulated, my skin feels like it needs rubbed or scratched, but that only makes it worse.  In fact when it's that bad my nerve endings start to feel sore. But pain meds don't help. When it's bad, any outside stimulation aggravates it, both physical (like the clothes) or external stresses, paying bills, or watching a suspenseful movie, stressful conversations, etc. It really interferes with my life.  Sometimes I have to stay in my room, away from everybody, to avoid it getting worse. My first neurologist said that there is not much research done for what I have since it's not debilitating, as MS or some other neurological diseases are.  But ... I hear and see all kinds of stuff about migraine headache research, etc.  I get migraines and I hate them, but I'd be so happy if I could trade this for migraines.  I live in Pgh and my son is a senior at CWRU.  I was wondering if it might behoove me to try the Cleveland Clinic? ... or is my neurologist right; there's not much that can be done with what I have? Am I going to have to suffer it out? And is there any treatment that won't cause me to gain weight?  I am small boned and 5'1."  I don't carry extra weight very well and I want to look good for my husband (well, as good as one can look at 53! LOL) What would you suggest?

[terryd218]

Thank you for your response.  I recently purchased a quality bottle of  B Complex;  I haven't been taking it long enough to know if it'll help yet.  I also have a prescription for the other medication that your dad is taking. I just wish I could find something that works as well as the Trileptal worked for me.  There were no side affects for me with that drug and that is soooo rare.  Thank you for the site.  I will check it out.

[Hoover7]

Although it's only been a couple weeks, my Dad has had a turn-around.  One of the things you seems to share with my Dad is the fact that he's had no weakening at all in his extremities.  From what I have read, all B12 is not the same, and different people process it differently.  Here's a site you may be interested in reading.

http://lpi.oregonstate.edu/infocenter/vitamins/vitaminB12/