Theorems on repair?

[CureOrBust]

Has their been any published information regarding the cause of the apparent repair in those that have had the treatment?

even speculation? I know I have my crazy ideas

[Lyon]

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[gwa]

That makes sense. But I am confused when they say SPMS and PPMS do not have inflammation. They just get worse, there is nothing to heal.

If this treatment can make RRMS go into some sort of remission. Thats great, but what if there is a secondary part of this disease thats being missed such as SPMS where it seems to be RRMS first. People recover from attacks with RRMS, yet still seem to go into SPMS.

Maybe they are just putting a bandage on the disease yet not really 'curing' it

Most of the info I have read about SPMS indicates that neuro degeneration is taking place in the grey/white matter and less to no new lesions are developing.

My latest MRI was in January. Even though I have had MS for over 36 years and am 6.5 on the EDSS scale, my MRI showed no lesions at all.

I believe that some would have shown up in a stronger MRI, but the radiologist did not agree with me. He probably didn't like it when I told him that I thought his machine was woosie either.

A complete neurological exam following the MRI left no doubt to the neuro that my problem was definite MS, but without lesions showing. This is one reason that I am totally unimpressed with meds that gravitate to reducing lesions. It is a "So what, big deal" in my view when lesions shrink or go away.

gwa

[Lyon]

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[Loobie]

GWA,

I even thought that was peculiar when I was first being diagnosed. I was having symptoms, but the MRI's always came back as "unremarkable", which I guess means no lesions. It wasn't until about 4 years into it did I get my first lesions that showed up on an MRI. And then last November I had one of the only relapses that I felt I could identify. I felt bad enough rather quickly to say "I'm having a relapse". My legs were getting bad and my ON was going into high gear. Well since it was waist down and on both legs, my neuro. was pretty sure it was something spinal. Well it came back with no new lesions. That's when my neuro. started suspecting I was progressive.

[Lyon]

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[gwa]

I always thought no new lesions and no enhancment was always a good thing.

The problem with this idea is that there is not a correlation between lesions (at least those that are detectable) and symptoms.

I am interested in taking a med and getting better, like having my legs moving and walking faster. I don't give a hoot as to how many lesions I have or whether they are enhancing. Someone else can do the happy dance with those reports.

gwa

[Lyon]

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[gwa]

gwa, you don't have any lesions at all after 36 years? You sure you have MS?

All of my symptoms are classic MS. I have been seen by at least 10 neuros over the years, all of whom have classified me as having MS.

There are between 5 and 10% of MS patients who do not show any lesions. I believe that with a more powerful MRI that there would be a lot of lesions, but the lower Tesla do not show the lesions.

I read in the past few months that when patients were run through the 7 Tesla, which is used in research, that hundreds of lesions show up, even though none showed on lower Tesla machines.

gwa

[Lyon]

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[gwa]

I personally think anyone in "limbo" should be sent to a higher resolution MRI and the percentage diagnosed with MS in that way should be documented.

Bob

I agree. A lot of people would come out of limbo this way. Too many doctors are focused on lesions in order to make their diagnosis and if none show up, the patient frequently is not diagnosed.

gwa