Originally Posted by missj

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}

Originally Posted by nikki79

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.

Originally Posted by Snoopy

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.

Originally Posted by Harry Z

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



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Hi my name is Carol and I have had ms for 12 years First symptom was optic neuritis, then numb feet and went up to my knees, then I couldn't walk more then 20 feet or so before having to stop and wait for the weakness in my lower spine and the tingling to pass and then start all over again. It took my doctors that long to find lesions on my therasic spine (2). I started on avanex for several years I was doing fine after the walking flair up for a year. I then went off of it. I was tired of the flu like symptoms. I was feeling good. Except for my emotions and making wrong decisions but I didn't realize this at the time (years). 3 years ago I started losing my balance and making faces and not realizing it. Wierd right!!! I then started having a strapping feeling in my right thigh after sitting or driving for more than 25 min. The pain then radiated down my leg to my foot, then up my right budocks ( I don't know if I spelt that right.) The burning is terrible, went to doc and had 3 new lesion on my brain. He didn't seem so concerned but I get confused very easily and don't remember things. But to get to the point I went for years without getting any new lesions, is that rare. Any input will be helpful. Sorry it's so long. Carol









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