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Originally Posted by drbuddie
HERE!...
Well, I'm making my second trip to the hospital for my second in 4 months multi-day neuropathy drip, the admitting doctor indicated in our discussion my diagnosis of "anti MAG neuropathy" (to coincide with my mono clonal gammapthy. He Goggled the subject on my laptop - and I saw your post. One in the same issues Granacki - like listening to myself...same age (60), same almost everything. If this [2nd] 4-day treatment doesn't work...then there is a [dialysis] form of treatment which as described to me "replaces (someone elses) protein serum for the anti-MAG one I/we have." SO, one (painful) step at a time. It's all very frustrating, debilitating, and painful by the day. But I have resolved to keep walking (every other day as you for recovery minus my summer mowing), using my Bowflex every other day for strengthening, and hopefully we'll see results this [last] time around before we get into what my neurologist calls the "invasive" procedure I mentioned above. Also, had the scare where my N-Dr sent me to hemolotolgist/oncologist because of the mono clonal gammapathy of "unspecified origin," which could - or not - be associated with my neuropathy...and potential for or cause of bone/blood cancer(s). Negative, with Anyway, keep heart. Reply an/or email, we can either commiserate or see if we're both experiencing likewise issues and what one might be doing.
Good luck.
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Hello, Dr. Buddie. Sounds like you and I share a diagnosis -- mine was 10 yrs ago as "monoclonal Gammopathy". The neurologist just gave it a name and sent me on my way -- guess they didn't have the science to treat it in those days. Recently went to OSHU and they did highly specialized blood tests, hence the "antimag" diagnosis and a process of plasma pheresis was recommended. Have had 13 treatments since April 2009 and am getting better - slowly. Yes, having the port installed and dealing with it over the months was scarey at first and certainly unhandy to live with. BUT VERY HANDLEABLE as compared to getting worse!!! The pheresis process took abut one hour each time. It takes all the plasma out and they discard it with all the bad proteins (and the good ones) and replace it.
The dialysis staff is hugely knowledgable and helpful and i always felt secure. As I have mentioned I AM GETTING BETTER - more sensation in feet and ankles -- I am more steady walking - haven't tripped in months. I've just had the port removed -- I may have a fistula in my arm installed if further treatment is indicated. dr. also talking about trying Rituxan in the future, as an alternative. I have a few months to see what happens. I am going to Europe in October and will celebrate my 70th Birthday on a rivership on the Rhine. Meantime, just wanted you to know that Plasmapherisis was a help to me. Good luck. Nancy W.