This Is MS Multiple Sclerosis Knowledge & Support Community

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so i watched that video that gwa posted here and thanks it was really interesting. the amount and aggresivness of T cells is mostly what causes the different forms of ms.

rrms = sudden T cell attacks on the mylien but remission occurs
spms = constant T cell attacks on the mylien with no remission
ppms = constant aggresive T cell attacks on the mylein with no remission

these T cells just happen to encounter mylein cells in the brain or spinal cord at random locations which is why we all have different problems.

is the reason that the ms goes from one type to another because of the amount of T cells or just something about the way they act?

bob why do more people start out with rr is it because at first these T cells are confused and over active and with time they just settle into a more gentle and consistant attack?
thx again gwa for the video it helped understand.

hi robbie, check out the daily life section, the sleeping problems thread. possibly of interest to you (not about sleeping we are rambling, some applicable to you perhaps)

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Lyon wrote:
I've heard people mention that researchers time would be better spent designing treatments for progressive MS and it really does seem that is true. Sadly, because 85% of the patients have RRMS and that is where the vast majority of treatment profits stand to be made, designing RRMS treatments is all that anyone has ever been able to bring themselves to focus on.

Bob

Bob,

You continually refer to the 85% figure that is supposed to be the percentage of people with MS. It is driving me crazy because the statement is not true.

From the MNSS web site, the following statements are what is really said on the site:

"Approximately 85% of people are initially diagnosed with relapsing-remitting MS.

Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition."

http://www.nationalmssociety.org/about- ... index.aspx"

In other words, 85% of the patients start out with a RRMS diagnosis. Then 50% of those patients transition to SPMS. Overall, there are a lot more people with SPMS and PPMS than RRMS because many of us have been around eons and keep adding to the progressive types.

So the companies need to stop repeating their useless back patting trials to determine if their product is better than the other guys and get on with some research that will help all of us. It reminds me of kindergarten kids trying to determine at recess whose is longer.

Enough already.

gwa

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Hey Bob and GWA-

I'd love to see those percentages, too!

Thanks for clearing up that 85% at time of diagnosis, GWA. I was also confused by that number.
Wonder how many MSers leave this planet with RR?
Or what's the percentage of RR MSers in the 40 year + age group? Also curious if those who utilized CRABs in the beginning of their disease process have shown any long-term gains.
Agree with the need to end competitive , back-patting studies, GWA.

AC

Lyon wrote:
Hi gwa,

If you know of or happen to run across any documentation I'd REALLY be interested to know the real percentages in the different phases of living MS'rs.

Bob

If I see any percentage data, I will post it. I really think such data probably doesn't exist because many people that are SPMS don't go to neuros anymore because we know they are of no use to us as we are basically not treatable and they are a waste of time and money. It is difficult to take head counts when part of the patient population is invisible to the head counters.

My own guess would be that at least 60-70% of all patients are some form of progressive if you take into account that about 10% are PPMS from the beginning and about half of RRMS patients revert to SPMS within a decade or so. That is a lot of added progressive cases over a few decades.

gwa

cheerleader wrote:Hey Bob and GWA-

I'd love to see those percentages, too!

Thanks for clearing up that 85% at time of diagnosis, GWA. I was also confused by that number.
Wonder how many MSers leave this planet with RR?


Or what's the percentage of RR MSers in the 40 year + age group? Also curious if those who utilized CRABs in the beginning of their disease process have shown any long-term gains.
Agree with the need to end competitive , back-patting studies, GWA.

AC

cheerleader,

If the percentages that the NMSS quotes are correct, about half of all patients remain RRMS till death.

It is still unknown after all of these years if the DMD's are working because according to the NMSS, "Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition."

So, even though the drug companies sell their meds to MS patients as products to delay transition to progressive types, it appears that no studies can confirm this.

It is anyone's guess as to why such studies haven't been conducted or if they have why they haven't been posted and reviewed in peer related journals.

I am certainly no expert on the CRAB's, but if the NMSS says there is not any long term data on the efficancy of the meds, I believe it.

gwa

You got me wondering about the number of people with the different MS types. I see that the Sylvia Lawry Centre uses 2.5 million as the number of MS cases world-wide. Then this sample (random, but self-selecting I think) of the NARCOMS database gives a breakdown that to me sounds like it could be in the ball-park:

A total of 10.5% of patients had primary progressive, 47.6% relapsing-remitting, and 33.3% secondary progressive disease.

http://www.neurology.org/cgi/content/ab ... 66/11/1696

So maybe, roughly:

Primary-progressive: 262,500
Relapsing-remitting: 1,190,000
Secondary-progressive: 832,500

Of course there is also progressive-relapsing, which I saw somewhere might be around 5% of all cases...so all this is just an uneducated WAG.

I've always thought that one of the main reasons the drug companies focus on treatments for RRMS is that it is the only phase of the disease in which they have any chance at all of making their outrageously expensive treatments look successful. By focusing solely on RRMS, they are dealing with people in early stage of the disease and likely producing statistics that look good in part due to naturally occurring remissions and lower levels of disability. Perhaps it's just my rampant cynicism gone wild...

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Nessabear wrote:I've always thought that one of the main reasons the drug companies focus on treatments for RRMS is that it is the only phase of the disease in which they have any chance at all of making their outrageously expensive treatments look successful. By focusing solely on RRMS, they are dealing with people in early stage of the disease and likely producing statistics that look good in part due to naturally occurring remissions and lower levels of disability. Perhaps it's just my rampant cynicism gone wild...

This is my thoughts too on why the concentration is on RRMS.

I am also curious as to when the insurance companies will demand some proof that all of the money that they spend on the CRAB's is well spent. It is very odd that since the primary reason for taking the drugs is to slow progression and yet after all of these years of availability, no definite research is being done to assess the productivity of the med.

The criteria for money well spent would be that the med is really slowing progression or that the patient is getting better. Enough patients have been on these therapies well past the 10 year mark, so just calling some doctors that prescribe it might be a better way to find out how patients are responding. It would probably be a more accurate and less biased way of uncovering whether the CRAB's have any effect on the disease as opposed to checking out the latest in house research by the drug companies.

gwa

i will be the first one, took beta interferon for just over 8 years and at 16 years into it i'm in a wheel chair. 8 years at roughly $21,000 a year.