at last I can relate

July 15, 2009 at 12:14 pm

I have been reading this forum for a long time, and vainly searching for anyone with very painful CIDP. I have been steadily losing my sensation over the past 20 or so years. I have been thoroughly poked, prodded, scanned, and lab tested for everything that has been known to cause neuropathy. (Not Multifocal) A sural nerve biopsy several years ago confirmed the CIDP, and I have some elevated proteins in my cerebral spinal fluid and now some findings with nerve conduction studies. Other than that, I continue to be “normal”. My reflexes are slowly deteriorating, but for the most part are not that abnormal. I am strong physically and have only recently begun noticing muscle weakness. But four years ago I broke my big toe and never felt a thing. Ended up having surgery and had to nurse that toe for many months to get it to heal. Last year I stepped on a tack through my shoe and ended up with a terrible infection in that foot that took many months to clear up. I am not diabetic — the first thing everyone asks me. From just below the knees down on both legs, I have no skin sensation — I can feel pressure but I cannot feel hot or cold or pin pricks, broken bones etc. I recently was stung by a wasp on my ankle. It was an interesting experience because I sat and watched him sting me and couldn’t feel a thing.

This complete numbness was preceded by years of agonizing pain that no one could explain. I sustained a severe injury to the L4-L5 disc about 20 years ago and subsequently two surgeries. And even though it was mainly right-sided weakness that I had, the doctors just always attributed my bilateral neuropathy to that in original injury. About 6 years ago it started to affect my fingers and I knew then that I had something else going on. (Actually, I had known for years but could not convince the docs who just thought I was crazy)

Currently I am suffering with that agonizing pain in my hands. I cannot bear to touch or to be touched, and I have spasms in my arms that I have determined run along the nerve paths. My fingertips are numb, and I have lost the ability to feel hot or cold in my wrists and hands. My arms ache, tingle, burn and twitch- from the neck down. Because my job requires a lot of computer work, I struggle to meet my deadlines and do the good job that I know I’m capable of. They have given me Dragon software (a hands-free dictation system) and I am still the process of learning how to use it. But that does not help with the chronic fatigue and constant ache or the unsteady gait and lack of energy to do those things that I used to find enjoyable. Some days I find the pain unendurable. My docs are free with the pain medication, but that just makes me more tired and less able to do my work. I have tried every thing anyone has ever suggested — diet, exercise, acupuncture, supplements. Biofeedback has been the best thing I have found — but it puts me to sleep-and while it relieves the pain, I certainly can’t work that way.

And then there is the electrical storm that seems to travel up and down my body. My husband reports that my body literally comes off the bed at night when I am sleeping and have what my children call “one of mom’s seizures”. It feels as if a lightning bolt hits me and travels through my body. These can occur anywhere in my body and any time of day or night. I usually can identify the starting point and the endpoint — a very strange sensation and often very painful and embarrassing when occurring in public. Sometimes we can see little spasms in different muscles — it looks like little bugs are crawling around under the skin.
I have been treated with IVIG and methyl prednisalone every month for two days at a whack, and this seems to help for a time… but the benefit period seems to be shrinking, and the two days from work each month have eaten my sick and vacation time up. The nerve involvement is progressing steadily… lately it seems on an accelerated course of destruction. I spend my days longing for the time of day when I can curl up on my bed and sleep.

I am waiting for my doc to complete the needed paperwork for a trial of Rituxan- recommended by a specialist in Boston. I have heard some people have had good results with that. And I am hopeful.

currently I am also taking a coctail of medications… and still I hurt.