Anyone have Multifocal Motor Neuropathy ??

nate · 09-09-2009, 08:43 AM

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

eagleflight · 12-09-2009, 12:45 AM

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:

Originally Posted by nate

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

Kelly in Oklahoma · 01-02-2010, 11:22 AM

Quote:

Originally Posted by nate

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

How long did it take you to get a diagnosis? I was finally diagnosed in Oct. 2009 and finished my first round of IVIg Dec. 14. Are the jerks the only symptoms you have? I live in the Tulsa, OK area.

Kelly

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