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05-31-2009, 03:57 AM | #1 | ||
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Thanks so much for your information on the different websites. So far I've been doing my own research (to my hubby's chagrin) to try to find out what the heck is going on with my body. Had symptoms since Dec 08 and finally getting to the point with doctors that hopefully, I will be diagnosed within this coming month of June. CIDP was ruled out already along with MS and LUPUS,etc. Very good neurologist did all the tests thinking I had CIDP and surprised himself when the tests came back negative for it. He has referred me on to a different type of neurologist now when he said I might have MMN. I have seem to come down to either MMN or possible ALS. Doctors don't seem to want to help much and was having insurance problems with the referrals to more major doctors. I think I'm finally over it. My problems started in my legs, which seems to be sort of unusual. Most people seem to have it start in their hands. Anyway, thanks for all of the different info. -B
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"Thanks for this!" says: | (Broken Wings) (06-08-2009) |
06-04-2009, 08:11 PM | #2 | ||
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Quote:
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09-09-2009, 08:43 AM | #3 | ||
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I have MMN. I first experienced symptoms almost 20 years ago. They were so mild I did not act upon them at first. When I did it took several attempts and multiple doctors to get a diagnosis. I start IVIG on Sept 14 2009. Anyone had luck with Rituximab? My symptoms seem to be progressing more quickly now with the jerks getting worse but I have not had cramps yet.
I live in Dallas and am looking for a support group or even one other person to talk to. Nate |
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12-09-2009, 12:45 AM | #4 | ||
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Hi Nate,
I would be happy to talk with you. I have had MMN for 20 years and have learned a lot about what helps. Quote:
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01-02-2010, 11:22 AM | #5 | ||
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Kelly |
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