The alleged research commitment by NMMSS

[bluesky63]

I've been intrigued by the idea that MS goes progressive once the active immune response burns out. In other words, the immune response is either a decoy or is actually a good thing. Not a new idea on my part -- smart people have proposed this before -- but it's worth thinking about. Always good to turn the situation around and consider that what you think is a "problem" could be the opposite when you're trying to find the solution. At least, this is what I used to do as a manager. Back in the day.

[fogdweller]

Bluesky:

I agree, use it as a clue. Why does MS progress from RRMS to SPMS? It strikes me as also possible that it is progressing all along, but when the amount of accumulated damage overwhealms reaches a certain point, the retreats are not identified as remissions, so the doctors identify the patient as constantantly getting worse and thus progressing.

I have very mild PPMS and have never had what has been identified as a remission. However, in my personal opinion, I have had periods of very little if any progression when I have been able to function as though I did not have MS at all. If my bad periods had been very bad, and then I "remitted" into a milder condition, they would have called it RRMS. The relapsing and remitting may be an inflamatory reaction, whereas the progression is going on all the time in the background, albeit at fits and starts and not a steady straight line decline.

There is also the fact that the brain is an amazing thing, and when damage occurs, the brain is able to transfer the function from the damaged tissue to some other part of the brain, usually not as effective buyt this too would have the appearance of a remission.

All speculation, which would be fun if it were not our daily reality.

[Lyon]

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[patientx]

Yo, patient x
I'm calling you out.
how come I post something and you're on me like a cheap suit

It's because I can't afford expensive ones.

One thing I can tell you, beyond a reasonable doubt, it what Dr. Dake said. You do not know that...

so back off, paper hat (wo)man

cheer

You got it (it's man, by the way). But, I did speak with Dr. Dake by phone last year. And he indicated that he thought Dr. Zamboni's idea had merit, that CCSVI might be involved in the pathogenesis of MS. (I don't consider this in any way a bad thing; I'd like to see more doctors investigating this association.) As you said, he was clear that nothing could be said how treatment might affect MS symptoms/progression. But, you have had more contact with him than anyone. If Dr. Dake does not feel this way, then you're right - the Lancet should retract, or at least correct, this statement in the article.

I am glad that your husband is doing so much better because of his CCSVI procedure.

[mangio]

BBC website three or four years back reported an interesting finding by
an Italian researcher. By adding more cells to the abnormal area
the immune response was stopped or slowed considerably.