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Originally Posted by Susanne C.
No, they are not. That doesn't mean that you don't need them, but they prefer pain medication be handled by a family doctor or pain specialist who sees you more often, and can monitor your usage, reactions, and pain levels. In fact I was "dismissed" by my neurologist as hereditary neuropthies are not treatable and the only care is basically mechanical (AFO's, canes, etc.) or palliative. She did send me to Johns Hopkins for a second opinion and more testing, but her original dx of CMT was unchallenged.
What tests have you had? My EMG/NCS showed large fiber neuropathy, the skin biopsy at Hopkins showed advanced SFN. I have visible muscle wastage. My pain is all over the place, but the worst of it feels like it comes from the long bones in my legs, and fom the stiffness in my feet, ankles, and legs. It is primarily a crushing, twisting feeling. I also have pinched nerves at wrists and elbows, slight, occasional clawing in my hands, and pain and stiffness along my hands on the pinky side. It has definitely gotten a lot worse in the past few years, despite my neurologist's insistence that it "isn't supposed to hurt this much or get worse this fast." For most of my life I was merely clumsy and uncoordinated, about five years ago it started to get much worse.
If you have a good relationship with your PCP, I would start exploring pain medication options there. Many neuropathy patients with moderate to severe pain are on some combination of gabapentin, an anti-depressant, and an opiate.
Experimenting with what you have is probably not advisable long term, but if you were to find that it helps...be careful how you present it to your doctor. You want it to seem like his idea.
If the gabapentin was working, you may want to give it a longer trial. It is a very safe drug and sometimes the side effects pass after a while.
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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. Now, it is really difficult to do most of the athletic things I did in the past...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.