Quote:
Originally Posted by echoes long ago
i have had PN for over 7 years now. It has progressed steadily from my big toe on both feet to just below the knees and in my hands past my wrists. In the beginning it was very painful in my feet, stepping on a pebble was like stepping on an ice pick. My feet and legs eventually progressed into a deeper degree of numbness which helped the pain , along with many other things i have tried to differeing degrees of success, tens, interferential therapy, vitamins, wellbutrin, neurontin, lyrica, topamax, paxil, effexor, trazodone. Except for wellbutrin which did help the pain, the other drugs i did not react well to. Recently in the last 9 months the pain has started to ratchet up again in my feet especially.
Because of deep numbness in my feet my balance is very bad, ironically i also feel like i am walking or standing on broken bones even through the numbness. 20 minutes is it for me standing. I also drop or knock over a lot of things with my hands.
I have waged a long war with PN and feel that im losing badly.
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Hello. Your symptoms and mine are very similar and I am getting help now and seeing improvement. I was diagnosed 10 years ago with monoclonal gamopathy and noone suggested treatment. So I got progressively worse - all the symptoms you mention and getting harder to walk (and a few falls and tripping over my own feet). Finally saw a neurologist who after many fancy blood tests, diagnosed me with antiMAG and put me on a regime of plasma exchange (plasma pherisis). That was 4 months ago and I am seeing improvement - not huge dramatic improvement, but I am walking better and I believe I have more feeling in feet and legs. The same neurologist is now suggesting Rituxan - don't know if I will do this or not yet.
Hope this info helps you to know that there is new information out there and I hope you can also find some help. REgards, Nancy W.