This Is MS Multiple Sclerosis Community: Knowledge & Support

I thought this was morbidly interesting. It's from the New York Times, August 28th, 1910 (click on "view full article")

http://query.nytimes.com/gst/abstract.h ... 5B808DF1D3

yeah - that's what they used to call it. My grandmother's grandmother had it...then it skipped all those generations and came out in me.

He appeared unusually feeble after a long walk on an August day...I don't suppose the disease has changed much in the last 100 years.
How hopeless he must have felt.

Creeping paralysis sounds like a horrible name for multiple sclerosis - but it maybe a more accurate one. I have heard that a certain percentage of people over the age of 50 have scleroses in the white matter yet have no symptoms of any illness whatsoever - this is sometimes evident when random autopsies are performed. Also that there are many people who have the symptoms of creeping paralysis (or MS, or call it what you like) but with no evidence of any sclerosis in even the deepest MRI scans.

Does anyone know if the incidence, frequency or size of lesions correlates reliably with severity of the illness? I doubt it somehow. I think MS is a poor term for this illness and since MRI evidence of sclerosis became the crucial diagnostic test back in the early 80's it has caused many people who suffer from creeping paralysis to go without diagnosis, help, or support for years on end.

I believe white matter (or grey for that matter) can be compromised, causing the symptoms of this disease without actually being scarred or visibly damaged.

Many people on this forum say "I went 10 years , 14 years 16 years before I had a diagnosis" - my heart goes out to those people because they clearly suffered all those years from creeping paralysis before any sclerosis began to show on MRI scans. It's a ridiculous situation. Obviously, in retrospect, these people had the disease all along, yet no scars were at that time evident or even in existance. In the less scientific days of the "hot tub test" many of them would have been diagnosed by the severity of their disabilities or diagnosed by regarding the illness as a syndrome - a collection of symptoms... and quite rightly so.

In other words, the way they do it these days is that even if you have all the symptoms of creeping paralysis (MS) - you are told you don't have it - regardless of how paralysed you are, regardless of the number of classic symptoms you have, regardless of how much you are suffering, unless you actually have visible scleroses in the white matter.


gainsbourg

I am one of those people....14 years with no diagnosis (11 clear MRI's, 2 clear LP's). As soon as I got my big relapse 2 years ago lesions showed up everywhere and LP became positive.

Maybe the hot tub test might have worked but maybe not as I only get affected by a hot tub sometimes....its weird.