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Old 02-21-2020, 05:28 PM
Suebee Suebee is online now
MS Master
Join Date: Mar 2015
Location: Houston, TX
Posts: 524

Lmh and all, I share my personal experience to help others understand my personal decision to take orcevous. I feel as a patient that I should weigh DMD choice risk benefits based on my circumstances so long as I fully understand issues and use neuro as a guide. SPMS is usually determined in retrospect based on clinical course, but there are some basic understandings (mri new lesion load, 15-20 years after diagnosis, brain atrophy, and specific performance parameters on cognitive testing)
I have no active lesions But new technique identified previously not seen lesions. My current mri shows lesions but not horrible. This is contrary to My initial attack, which was aggressive and long, leaving me homebound with caregivers. That initial lesion area over past 15 yrs shows disproportionate atrophy as does certain cortical.area not equivalent to my age. My mother died young from progressive ms. I have been unemployed more than employed. Neurocognitive testing showed some deficits consistent with What is commonly seen in some MS patients. I'm a cautious and risk adverse person, but I felt now was the time to use the biggest hammer I had against MS. My children are teenagers now and are not as dependent on me.

I am peeved by current trend for some neuros to discuss MS" burnout " . The world ms symposium ? Stated that the med evidence supporting this theory is weak and many neuros were alarmed saying that it is not " burnout" being g observed but that DMDs have worked. And and a certain percentage of patients will have "breakthrough" flares , which will require treatment. This is not acceptable to me since SPMS will march fwd regardless of this intellectual debate, and if I have "breakthrough" flare than I am the one that will need to put the pieces of my life together again and live inside this body with more disability.

Also I want to say that I believe neuros want what is best for their patients but every neuro has their own level of risk adverseness, thus I think it wisest to understand the med evidence behind their recommendations for particular DMDs and make ones own determination, with dr as guide. I deliberately chose to mitigate orcevous increased risk of infections by seeing an internist every 3 months to ck in, keeping up to date on all vaccines and wellness stuff, increasing dental cleanings to every 3 mo, and being a hand cleaning freak of sorts. I also started eating more plant based meals, and cut out my wine, at least for now, on theory that I wanted my body to focus on healing itself and not metabolizing alcohol. Mediation has been helpful to keep positive mindset. I was told about 33% actually (subjectively) feel better on ocrevous so I've been doing everything possible to be in that percentage. I think everything I'm doing is making me feel better, whether this DMD will slow my progression will need to be assessed in later date. I've picked a goal - to continue to be mobile in 10 years and generally independent. MS is a progressive chronic disease and no matter how brilliant or well meaning a neuro is, if they are a spry 40 year old person for example, how on earth can that dr do a meaningful risk benefit analysis for me? That dr has no real understanding of what An MS patient is willing to risk to stay mobile and independent. Best Advocate is you.
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