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Old 07-23-2014, 10:12 PM #11
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msbluis msbluis is offline
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Join Date: May 2014
Location: Georgia, USA
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10 yr Member
msbluis msbluis is offline
Junior Member
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Join Date: May 2014
Location: Georgia, USA
Posts: 82
10 yr Member
Default Primary Progressive

I've been PP for 20 years. No remissions, so of course no relapses.

My neuro is one of many at the MS Center of Atlanta - all of them MS Specialists. They speak at NMSS functions, participate in cutting edge therapy and have on-going trials for new MS drug therapies.

Dr. English, my neuro, told me years ago that PP, such as myself, "... might not be able to walk, but I'd still be "me"."

He told me he "wouldn't be surprised" if those like me, with their major lesions on their spine," nearly always exhibit mobility problems, where those with large brain lesions mostly result in more problems above the neck": optic neuritis, trouble with memory, swallowing problems, speech problems and hearing problems.

In fact, I clearly remember him telling me as we reviewed my C and T-spine MRI's in his office that he "wouldn't be surprised if they determined Primary Progressive wasn't a totally different disease from MS."

Interesting. That might help explain why meds that might help with RR issues don't do a thing for PP patients. CRAB's, Novantrone, Cytoxin, Tysabri...

Was he guessing? Was he letting me in on something? It makes semse to me. Time will tell.
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