RRMS with a high EDSS?

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RRMS with a high EDSS?

Postby AlmostClever » Sat Jan 23, 2010 12:36 pm

I'm a little confused.

I see plenty of ppl on here with EDSS's above 6.0 yet they are classified as RRMS.

Technically (and I understand RRMS do slowly progress) shouldn't a RRMS person have a low EDSS? even zero?

I believe some doctors and nueros somehow think that the progressive forms of MS have absolutely no way of being helped by Zamboni's procedure, yet the way I see it, aren't we all progressive? even those labeled RRMS?

What's the fine line of distinction?

I see at least a dozen ppl in the CCSVI tracking sticky labeled as progressive who were given the procedure and some improved as a result. (I also saw many RRMS with EDSS's of 5 or more!)

I don't want ppl being disregarded or skipped because they're "labeled" progressive when I think everyone really is. Does this make sense?
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Re: RRMS with a high EDSS?

Postby euphoniaa » Sat Jan 23, 2010 1:38 pm

AlmostClever wrote:
What's the fine line of distinction?

I don't want ppl being disregarded or skipped because they're "labeled" progressive when I think everyone really is. Does this make sense?


Actually, AC, there IS no fine line of distinction between the categories (which I just posted on ash's thread). And of course we're all basically progressing anyway. :)

Like everything about MS, it's an educated guess. Although she readily admits that I meet all the criteria for SP/MS (except I'm not sick enough), my neuro calls me an RR/MS patient with no relapsing or remitting so she can keep offering me drugs. I've read dozens of posts over the last few years where a patient's category is changed every time they change neuros - along with being dx'd, undx'd, dx'd again...

I'm not worried about how it will work if CCSVI is finally confirmed as a condition, since I assume most docs would just change our category like they do now if necessary. Plus, it doesn't look like it will even need a dx of MS in the first place if everyone can just go get tested for the blockage. A patient's treatment options would obviously only depend on the type of blockage and whether they've figured out how to address it.

JMHO.
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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: RRMS with a high EDSS?

Postby sou » Sat Jan 23, 2010 1:44 pm

Hi.

AlmostClever wrote:I'm a little confused.

I see plenty of ppl on here with EDSS's above 6.0 yet they are classified as RRMS.


No RRMS -> No drugs -> No money. As simple as that.

OTOH, define MS and define its subforms. You can't. Nobody can.

AlmostClever wrote:Technically (and I understand RRMS do slowly progress) shouldn't a RRMS person have a low EDSS? even zero?


Yes and no. It depends on the severity and the degree of recovery after each relapse. In general, this is nonsense neurologists use to confuse the discussion.

AlmostClever wrote:I believe some doctors and nueros somehow think that the progressive forms of MS have absolutely no way of being helped by Zamboni's procedure, yet the way I see it, aren't we all progressive? even those labeled RRMS?


Do they believe something like that? Based on what? On their pityful experience? How experienced are they? And how much have they helped anybody with any disease? And what will happen if this world someday got rid of MS and the emperor appeared to be nude all these years?

AlmostClever wrote:What's the fine line of distinction?


There isn't. The more RR, the more drugs they give, the more money they make. Plain and simple. A good business would be selling "I love RRMS" T-shirts to neurologists.

AlmostClever wrote:I don't want ppl being disregarded or skipped because they're "labeled" progressive when I think everyone really is. Does this make sense?


It depends on who labeled them. Fortunately, it is neurologists who did, so it is safe to assume that what they said is wrong.

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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