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Old 07-04-2008, 11:23 PM
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marcstck marcstck is offline
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Join Date: Sep 2006
Location: NYC
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Quote:
Originally Posted by chrishadms View Post
I agree they are not too sure about the inflammation and by default the earlier the disease is caught the better.

PPMS is a bad one and I agree this may not be for those folks. I just hate when people like me who had lesions all over their head are told they are PPMS by one neuro and another says it's RRMS.

What harm does it do to allow JH to decide what you are? SPMS doesn't necessarily show active inflammation either. In fact I know of someone with some big black holes who just had this done.
Chris, the difference between RRMS and PPMS is very clear-cut. If a patient has ever exhibited relapses and remissions, then they quite simply cannot have PPMS. If a patient experiences continued progression in the complete absence of relapses and remissions, then they likely have PPMS, or some other progressive degenerative neurologic disease.

Most neuros won't classify a new patient as PPMS for a least a year, waiting to see if the patient ever goes into remission. If they do go into remission, then PPMS can be scratched off the list of possible diagnoses.

There can be confusion between RRMS and SPMS, because often people classified as SPMS still do suffer the occasional relapse. This, I suspect, is also the reason the Johns Hopkins doctors are considering trying Revimmune on SPMS patients. Some of them might still have enough inflammatory disease evident to make the treatment useful. Incidentally, a patient having black holes does not necessarily lack inflammation. The black holes are indicative of permanent damage to the nervous system, not an overall absence of inflammation.

There's also a form of the disease called PRMS (primary relapsing multiple sclerosis) that is quite rare, in which patients suffer continued progression and marked relapses and remissions. This form of the disease is generally very aggressive.

I wholeheartedly agree with you that anybody interested in Revimmune should have the Johns Hopkins folks take a look at their records. Don't let anything you read on any of these boards be the deciding factor in your choices of treatment. Nobody here is a doctor, we're all just patients trying to fight through this damn thing. Educate yourself tirelessly, be your own best advocate, and find a doctor you trust. The stakes are too high to go at it any other way.
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