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rj9000

39 karma · joined August 11, 2022

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rj9000··on Multiple sclerosis has a common viral culprit, opening doors to new approaches
I wish you many more years of good health. Many people with MS have a normal life with little to no disability.
rj9000··on Multiple sclerosis has a common viral culprit, opening doors to new approaches
In my opinion living with this disease for a long time I think there's probably a link to lifestyle. I developed symptoms in graduate school during a very stressful time in my life. Years later I had another stressful event and had an awful relapse.

On top of that I've always struggled with my weight.

Makes me wonder if an underlying EBV infection, genetic vulnerabilities, unhealthy lifestyle and a stressful event that permits the EBV infection to compromise the CNS ultimately causes the condition we call MS.

rj9000··on Multiple sclerosis has a common viral culprit, opening doors to new approaches
Some countries prescribe Rituximab as quasi off-label for MS. Basically same drug for all intents and purposes as Ocrevus.

I think Sweden uses Rituximab openly for MS. In the US I've heard some neuros prescribe Rituximab if insurance won't cover O.

rj9000··on Multiple sclerosis has a common viral culprit, opening doors to new approaches
I had to get the shingles vax just before I got on O due to reactivation risk despite being way too young.

I got COVID vaccine and while I had a symptomatic reaction, the results of my antibody tests were concerning. I had my antibodies checked at LabCorp (forget exactly which protein they checked for) and my antibody count was something like 20, while my wife (as the control) had around 12,000.

Some of the most recent research suggests even though the antibody levels are low, there is a good T Cell response still.

You don't lose any immunity you already had, but any potential future immunity is likely blunted.

rj9000··on Multiple sclerosis has a common viral culprit, opening doors to new approaches
I've been living with MS for almost 15 years and still doing very well. However about three years ago everything went wrong and I got on O as soon as I could.

It's been amazing. Wish they had it a long time ago.

rj9000··on Multiple sclerosis has a common viral culprit, opening doors to new approaches
I'm on Ocrelizumab for MS, which wipes out memory B Cells. EBV lives in these cells. Ironically I'm sitting here at the cancer center now getting my semiannual infusion. Anecdotally this drug has made my day-to-day much easier.