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Originally Posted by judiesva
I first went to my Kaiser dr. 5 years ago and was misdianosed. Finally went back to new neuro at suggestion of gyno. I had the athena tests which were neg. Nerve conduction study results: "Abnormal nerve conduction studies of the lower extremities and left upper extremity (three extremities) with electodiagnostic evidence of a severe sensorimotor polyneuropathy with mixed axonal and demyelinating featuers with more prominent findings in the lower extremities." I have visual wasting in feet, no reflexes (including elbow), no feeling of vibration or coldness in hands, feet, legs. And thats just the start of Dr. findings. I have extreme stiffness in hands, ankles, and feet. Never thought about it being part of pn thought I was just getting old (51 but have had stiffness for years).For most of my life, I would consider myself as being a very gifted athlete. Fastest athlete through about 8th grade, very good baseball/softball, basketball player, skier, 5.0 tennis player, made aerobic and step videos, runner until knees gave out...This pn is REALLY hard to take. Definitly have gone through a "mourning" period this summer.
Good point about informing dr. of pain med use. I really dont like my pc dr. at Kaiser, in fact, can't stand her. Have tried to switch to one that treated my mother and is VERY nice, but he always has a full load. I tried Gabapentin for about 1 month, but really don't know how to deal with the "high" side effects and be able to function on the farm. Any ideas? Thanks for sharing your info. It is greatly appreciated-
J.
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Your findings and symptoms sound very much like mine. I didnt have the full athena diagnostics run, there didn't seem much point since overwhelming evidence to support CMT and no treatment. I may have it done so my children have more info, but as you noted, a negative result doesn't mean you don't have it. No doctor has ever been able to get a reflex from me either, although the Hopkins neuro proudly claimed he did, but it was too slight for me to notice! I was never able to run, skate, dance, etc. even as a child. We are the same age, and seem to be progressing similarly at this point, though.
Perhaps your neuro could refer you to a pain specialist? You should definitely try to find a helpful PCP, they are much more important than the neuros once you are diagnosed. A bad- unkind, mean, condescending doctor can cause depression and self-doubt that you certainly do not need on top of this challenging condition.
Have you found that you tolerate opiates like the hydrocodone better than the gabapentin? I do pretty well on them, not spacey at all, and much more able to keep up with some normal activities than without them. In fact my life would be pretty bleak without the relief from pain and fatigue. Still, a farm is a dangerous workplace, and I can understand why you would want to be very careful what you take.