interesting MS facts site
 

the facts that are stated here I found to be both reassuring and worrisome. And just because it is on the interwebs doesn't make it true. But here it is

http://www.themcfox.com/multiple-scl...ptom-facts.htm

from the page

reassuring fact:
Relapsing-remitting Multiple Sclerosis patients will have between 1 – 2 exacerbations per year.
{it is not clear if this takes into account the dmds. As we all know, they work well for some . And sadly not at all for others.}

worrisome fact
Relapsing-remitting Multiple Sclerosis patients develop, on average, 20 new lesions per year. 20 lesions x 17 years= 340 lesions (holy smokes)

reassuring fact:
Exercises or physical therapy designed to stretch the muscles, particularly those of the leg, can help prevent contractures, an irreversible shortening of muscles. {keeps me motivated to effect the things I can}

I've followed MS research for over 40 years and that list of facts looks quite accurate to me. And since it appears to be obtained from all reported MS cases, I would assume that it includes those patients who have used any of the DMDs.

A couple of personal observations....it takes 8-10 lesions to cause one measurable symptom so the number of lesions one has doesn't seem to be nearly as important as to the location of any one lesion. I would therefore minimize the lesion count measurement that the drug companies give us when trying to demonstrate that their drug is working.

75-85% of RRMS patients go on to develop SPMS. Assuming (and that is a dangerous word in medicine) that DMD users are part of these stats, it sure looks like the DMDs have little effect, if any, in controlling the progression of the disease.

It's quite frustrating to see that there are so many detailed stats on a disease that after some 60 years of research, has no known cause or anything close to a cure.

Harry

Try not to let these "facts" scare you too much. I know it is easier said than done. MS varies so greatly from person to person. I was diagnosed a little over 10 years ago and I have less than 10 lesions. (I think 6 or 7) I have had 3 relapsed in those 10 years. There are people on the totally opposite end of the spectrum too. We really never know with this disease.

McFox is a member here, let's see if he gets the message and splains!!:):D

It all depends on you, not the disease. We are individuals..:grouphug:

indeed!

Just a healthy skepticism of the interwebs.....nothing more!!!

The facts don't "scare" me since I don't have the disease. But if you look at the possibilities, it shows the huge range of problems that a MS patient can endure. Like you said, one never knows what is going to happen and no two MS patients are alike. No wonder it is so difficult to try and treat an individual.

My wife (passed away 2007) had a couple of very old and non-active lesions for a number of years. These were shown when she participated in a drug trial and had several MRI's for a period of one year. Yet her MS progressed in the last 10 years of her life. The lesions were occurring in her spine which they never knew at the time. Not many but in the wrong place!

Harry

missj,

Even though you can find basic stats and facts about MS, in general many of us will not "fit" into those stats or facts.

In my case: I have had 5 exacerbations in the almost 26 years of diagnosis...not the 1 or 2 a year.

I have numerous c-spine lesions and a couple of brain lesions but nowhere near the amount you listed.

I certainly agree with exercise and/or Physical Therapy being helpful for my MS.

thank you
 

Yea,
I have to believe that my lesion count is less than 20 new ones per year! My flares/year is also much less than the 1 to 2 per year. thankfully!

I couldn't tell you the number of lesions I had, the radiologist just said, "A lot". My neurologist said, "When there's a significant load, they don't bother to count". So I must have a good pile of the suckers.

With that said, I was guessed to have MS 5 years (at least) prior to my diagnosis almost 3 years ago. So say I've lived with MS approx. 8 years now, 2 relapses, and my symptoms (despite the amount of lesions) have been sensory only.

I saw my neurologist today who said, "I think you just got lucky" (about the fact that I'm stable and not on a DMD or Ty... though he tried to get me on either or today and I held firm).

Have to agree with Snoopy. We're all so very different with our diseases. A coworker has as many as 2 relapses a year, so maybe she's accounting for my lack of them?

MS is like fingerprints. its individual. While some may look the same, no one else can have "your" MS experience. While some are peppered with lesions and no sx, others have very few lesions and are peppered with sx.

Try not to let the facts get in the way of reality. ;)