Q: Late-onset multiple sclerosis: how rare, typical disease course, DMT recommendations?

[ActiveMSers]

Message: be great if you have a thread about LOMS. seems a real gap out there. e.g. how common/rare is it? what is likely disease course? best DMT? etc all best

LOMS isn't that rare, just uncommon. There are a number of people on ActiveMSers who have been diagnosed in their 50s, 60s, even 70s. Usually the disease course is mellower (but not always), and DMTs are often used (but often not). I'm posting this in the forum for other feedback. Members?

[sukie]

I was diagnosed at 65 and am now 70. I was originally told that I had RRMS, but now neurologists have changed it to PPMS. I am doing well, still able to walk. I do have a lesion in my cerebellum that is starting to cause balance and speech issues. My biggest complaint is back pain. Otherwise, I am still able to walk on my own around the park near my house.

[Wryfox]

Diagnosed last month at 56. I was told it is exceedingly rare. And I was told for years prior to diagnosis it was just effects of getting older, or working/exercising too hard. Just relax, I was told, its time to slow down(no kidding). As an athlete I knew something was wrong and eventually pushed hard to get a specialist to examine me. Glad I did. Limitations are relatively minor but consistant with a new diagnosis. I have nothing else to offer except that they are trying Kesimpta first. Only a few weeks in and can say that brain fog, fatigue, and weakness is dramatically relieved, but all else is the same(pain,numbness,tingling).

Edit 12/30/2021: Now 6 weeks in on Kesimpta, and pain, numbness and tingling is dramatically reduced as well, and stomach issues i've had for 2 years(loose, frequent BM) are not just reduced, but gone. Now BMs are virtually normal and I've given up the probiotics I was taking to control it.. Exercise levels are increasing every week. I am astonished at how effective this treatment is. I am also astonished at how much I was compensating for the symptoms I've had for years. Its like turning back the clock further every week to where I was years ago. Doc says it'll probably be 3 months before full effect is reached. Looking forward to it.