Thanks for sharing💖...
I'm so hesitant about trying medications due to my history of complicated and scary side effects. I decided that there is no way that I'll do the infusion therapy with Ocrevus (which my primary neurologist was hesitant to put me on in the first place, due to my age; didn't help that he shared about another female patient my age who had been on that drug and he decided to cease the infusions since it was creating such serious quality of life issues on her). My MS Specialist neurologist (the one he sent me to for a consult) agrees with my decision, said it could mask the actual cause of my plethora of symptoms, which to her and her colleague all smack of two possibilities: genetic disorders, two of which are seriously nasty. And as with you, vascular inflammatory factors. Right now I'm waiting until end of this week (Friday Aug 9) for zoom visit with her and a member of the university's vascular rheumatology department, to present to me what I call Plan B. I've learned through research that there is such a thing as vascular inflammation causing lesion formations....and I do have vascular issues...Plan C is more invasive: brain biopsy. Not keen at all on that. Difficult to accept the parameters of such a procedure. But I've been informed that it can reveal whether my seriously demyelinated brain is dealing with a specific genetic disorder (such as leukodystropy for one) or vascular in etiology. My lesions do not follow the MS norm. ALL are symmetrical by nature. And each day, I experience another effect on my body as they continue to are form. There's more, but I'll stop here.
I agree with you (as does my neurology specialist and her team) that taking med/injections prescribed for MS can do more harm than good, and can mask the "real cause" of all our symptoms. Right now, I am going to be doing more investigation/research on behavioral health sources, because I need help with my emotional and psychological health. Too much to try to tamper down on my own, I need guidance or at the very least a professional who knows how to guide people going through my hell journey.

I am including you in my prayers that you may find peace and strength as you deal with the multiple myelomas 💝. I strongly urge that you inquire about therapy just as I'm doing, that you can have an avenue for talking about your experiences and can be offered coping tools. It's my understanding that Medicare has programs (Telehealth). Please call and inquire.🙏🏽
ALSO: a really valuable resource is a social worker affiliated with your health plan or the medical center affiliated with one of your doctors. A social worker will advise you of ALL the services to which you could well be entitled.