This Is MS Multiple Sclerosis Community: Knowledge & Support

I am kind of curious as to how people view approved treatments here:

Everyone here has been RRMS at some point, I assume, with early clinical disease (i.e., low number of relapses, low EDSS, low lesion count). Imagine hypothetically, if this is the case, would you have the CCSVI operation performed and not go on any approved treatment for MS?

-CR

I have been refused DMDs by two neurologists. They say it's because I have SPMS. I voted no. Regardless of what Dr. Zamboni says, I cannot get a prescription, even for Fampridine. I do suspect CCSVI may speed up the pipeline, but I think I've been written off.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

My question was a hypothetical one. If you were early RRMS, would you only get CCSVI performed?

I think I may have gone with Dr. Zamboni in that case. Either way, not just CCSVI. Not the kitchen sink, but CCSVI causes autoimmunity, and it's hard to know when you will restenose. If you had ever lost the use of a limb, you might know what you would try.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

My neuro did not want me on any of the usual drugs for MS as I had had cancer. And all the CRAB drugs suppress the immune system, which one does not want to do with cancer.

hey 1eye, theirs no drugs available for SPMS? i ask because i might be SPMS already, how did u know u changed?

i can't speak for 1eye, but my partner knew she changed when the drugs stopped working. years ago, she would get an attack and then fill herself with drugs to recover - RRMS. now there is no recovering, just slow decline - SPMS

the only drugs she takes now is to try to improve her quality of life.

I believe that SPMS is determined by brain atrophy.

Age forty is the most common age for conversion from RR to SP, although it can happen earlier or later. I am not aware of any connection between SP and brain atrophy, although atrophy often does increase over the course of the disease.

i wonder if i switched to SPMS already, my last 2 doses of solumedrol didnt help at all when it had worked every time before. not on any DMD's

[Data of MRI and neuropsychological tests predict the course of typical remitting multiple sclerosis during five years].
Zh Nevrol Psikhiatr Im S S Korsakova. 2011;111(2 Suppl 2):29-37.

Abstract

A complex study of 50 patients with active typical remitting multiple sclerosis (MS) was carried out. Neuropsychological testing using Wechsler and Stroop tests and MRI of the brain with the morphometric analysis of focal and diffusive changes were used in the study. Patients were stratified into two subgroups by the changes in the performance of neuropsychological tests. The disease course was assessed during five years. In all cases, the natural course of the disease, i.e. when patients did not receive disease modifying drugs, was analyzed. The transition to secondary progressive MS and the marked increase in MS severity on the EDSS were found in the subgroup of patients who demonstrated changes in the neuropsychological test performance. The strongest correlation was observed between EDSS scores and the diffusive atrophy of the brain white matter on MRI. The data of neuropsychological testing and some brain MRI parameters may be recommended as a predictive test in remitting MS.

http://www.ncbi.nlm.nih.gov/pubmed/21919232

It's in Russian, but they are still scientists. Maybe this helps...

So, therefore, I wouldn't consider age to be a reliable factor in determining progression. Nor would I consider something as subjective as "CRAB drugs stopped working for me," because, after all, for two reasons: 1) MS does not typically strike at a specific age group (which, if it did, would make Cece's argument more compelling) and 2) Individual response and tolerability to CRAB drugs is exactly that: individual and unique to that specific person (some people develop a "tolerance" to interferon [antibodies, etc.] while others do not). What's worse of all is that since MS is so seemingly hopeless (without a readily attainable [a pill, a shot], foreseeable [I need to do steps a, b, and c] or acceptable [mosts neuros hate the thought of CCSVI] cure), MSers may be inclined to a bias in interpreting their own disease progression, if they are not privy to something more objective like MRI lesion count, total brain volume, scores on neuropsychological or cognitive tests.

The tendency of RR to convert to SP at around age 40 is something I've read many places. Wikipedia has this:

with the research cited [1] being this:
http://www.ncbi.nlm.nih.gov/pubmed/18970977

ms.about.com says this:

http://ms.about.com/od/multiplesclerosi ... s_spms.htm
but no supporting research is listed.

I'd be surprised if it's stated as frequently as it is, to learn that there is no research supporting it, but I haven't the time to dig through google scholar, so who knows.

I am approaching 40 in a few years, so it is a matter of some concern. Age 39 - 40 is also when the brain peaks in its amount of myelin, in the healthy population, and after that, gradually declines.

Thanks Cece. I'm personally curious as to when you were diagnosed. Were you having MS-like symptoms when you were in your 20s, if you were diagnosed at a later age? Or did it all come about at the same time but when you were older, but close to 40?

You have mentioned you are curious twice in this thread, CuriousRobot, it amuses me because of your name.

I was diagnosed at age 30, which is actually the most common age for MS diagnosis, but I had symptoms in my teens and twenties that could have led to a diagnosis had I followed recommendations such as, "See a neurologist," as suggested by my optometrist.