(Others) Thoughts on different MS (RR & SP)

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(Others) Thoughts on different MS (RR & SP)

Post by CureOrBust » 12 years ago

The following link had the following explanation, which i personally hadnt read before, and it made sense to me for the progression from RR to SP. dont know if it is still scientifically valid (if it ever was....)
The authors, Prof Compston and Coles of Cambridge, UK, concluded that axons were withering (transecting) due to a loss of trophic support from oligodendrocytes even in the absence of inflammation. ‘Trophic support’ describes the process whereby oligodendrocytes feed the axons substances necessary for their survival. Their first thoughts were that, by the time secondary progressive MS sets in, so many oligodendrocytes have been killed that a time-delayed progressive death of axons was inevitable.
Just in case someone else is as badly informed as me.

The guys rant is worth a read if you have a few minutes of spare time. It was way back in june 04
<shortened url>
Gilenya, 80mg Lipitor, Inosine, Minocycline, Suppliments galore.
3 CCSVI treatments, no major noteable benefits thus far.

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Post by bromley » 12 years ago


I'm seeing Dr Coles is a couple of weeks so will ask him about this.

There seems to be no real agreement on what is the start of this cascade - my good neuro mentioned to me that one of the problems was the death / damage to the myelin making cells because they were in a toxic micro-environment. But no-one seems to know why this is the case and why the immune system gets involved (or when it gets involved).

I'm also unsure about the real difference between RR and SP. I read that 50% of RR go to SP by year 10, and 90% by year 25. But I also read that MS is always progressing i.e. from the very start.

But the Campath trials showed that despite irradicating inflammation in those with SP, atrophy and disability continued. Whereas, for those with RR, there were improvements in EDSS. So there is a difference but I'm not sure how they tell - perhaps if you have not had any relapses yet disability increases (but there's also SP with relapses!). And some SP seems very slow (I think GWA saidd she has been SP for three decades) but for others it is very aggressive!

When I was dx my neuro went through the different emotions one would suffer - anger, denial, bargaining. I still bargain every day - why not asthma, gall stones, testicular cancer - anything except MS!


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Post by 2gentle » 12 years ago

*sigh*...I guess that's why they say it's different for everyone...no two people with RRMS, will progress at the same exact rate, even though BOTH have RRMS.

For example, one of my friends is dx'd w/RRMS, and she still walks around and does pretty much as she always did, with some noticable symptoms such as fatigue, and cognitive issues, being the main ones.

Another friend, *was* RRMS, then progressed to SPMS in a little over a year's time. She took nothing for her MS, till right before she was dx'd as SPMS. The other friend took one of the therapies 2 years AFTER she was dx'd with RRMS.

It's crazy, isn't it?? Be well, and stay cool!

Every journey begins with a single step...Diane

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Post by gwa » 12 years ago

My experience with MS is that it does always progress. The way I can tell is to examine how I am doing at the present and compare that to five or ten years ago.

There is always a marked difference in my abilities between then and now. MS is misleading though because it can progress so slowly that you don't realize what is being taken away unless you think about how you were then and compare it to now.


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