MS & aging: I don’t understand why my... - My MSAA Community

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MS & aging

Kellygrn profile image
11 Replies

I don’t understand why my doctors and many on line docs think MS just stops at a certain age. I am 76. First symptom at age 12. Tried all the injectables when they came out. Aged out when the newer drugs came along.

I am still having issues so I treat the issue with specialist. That is lots of doc visits! Most have no idea how MS effects your body but we try to work out the problem.

Guess I am just complaining but anyone else aged out? What are you doing to help yourself?

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Kellygrn profile image
Kellygrn
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11 Replies
NorasMom profile image
NorasMom

My doctor felt that my MS was too advanced at 55, but quite frankly I think I'm in better shape with it than many younger people or those who haven't been dealing with it as long. I just treat my symptoms with OTC meds, herbal teas, and an electric heating pad like I've done all along.

I do think that DMT's should be at the discretion of the user. If you feel that one will help you, then no one should be able to say "you're too old". Just because the researchers screwed up and didn't test them on older patients doesn't mean that they suddenly stop working at a certain age.

starlight5 profile image
starlight5

Good topic. My neuro said we will have that discussion when I turn 65 but she doesn't seem to be one who believes in "aging out" on DMT's. Of course, every person and situation is different.

LJMC profile image
LJMC

I'm 80 and was diagnosed with M.S. 50 years ago. My doctors understand that I still have M.S. and have me on a DMT for the M.S. Whenever I have an ache, pain, or tic that my Primary doctor can't explain, he just blames it on my M.S. And whenever my M.S. neurologist can't explain an ache, pain or tic on M.S., he blames it on me getting older.

goatgal profile image
goatgal

I was diagnosed at 70, thirteen years ago. Every doctor I saw considered me too old for DMTs so I've never taken any. My difficulties have increased but I am still able to live alone, independently in a rural area. I know at some point my situation will become untenable; so I hope that the end comes before I exhaust all my resources by becoming unable to care for myself.

KarenUSA profile image
KarenUSA

I aged out too. Took injectables for 17 years. I do still have a Baclofen pump. I’m 77 years old and have had MS for 30+ years. A rollator and a KAFO brace keep me mobile and upright.

mrsmike9 profile image
mrsmike9

I am 64 and if my neuro says anything about stopping my meds, I will fight it.

Kellygrn profile image
Kellygrn in reply to mrsmike9

What if your insurance won’t cover it any longer?

mrsmike9 profile image
mrsmike9 in reply to Kellygrn

I will fight them, then. Won't be the first time.

Tazmanian profile image
Tazmanian

My neurologist doesn't believe that you ever age out

Fancy59 profile image
Fancy59CommunityAmbassador

Like you mentioned MS effects everyone so differently. I don't believe you can make the statement that people age out and treatments aren't beneficial once they reach a certain an age. My neurologist made me look at it from a different point of view. He's an Allbright scholar with a Doctorate in MS Immunology. He advised me not six weeks before I got violently, almost fatally ill that as we age our Immune system weakens. On top of this most of our MS DMT's work by also weakening the immune system to attack cells cells that carry the MS factor with them. After a certain age when the immune system becomes weaker, usually sometimes in your sixties, this combination creates a double wammie. Then this combination can let your body wide open for severe infections that normally it could have fought off. As in my case, can a UTI normally kill you? You might have to go to the doctor and get antibiotics when you feel bad but then it goes away. But before I even realized I had one, it had me in the emergency room with a septic infection that all but killed me.I go in to see my neurologist next monday and we're doing a MRI to see what my MS is up to. If we find any new lesions or actively inflamed areas then we will discuss some options about further treatments for my MS. After I visit the doctor next week, I'll let you know what he suggested and what's going on with my MS since my last Ocrevus infusion was in Dec. 2021. Fancy59.

agate profile image
agate

I don't quite understand this idea about "aging out" of MS. We're still stuck with deficits we're dealing with on a daily basis even if we're not showing any new MRI lesions. MS doesn't just go away.

I'm 83 now and recently went back on glatiramer acetate after being off it for 10 years. The neuro had her doubts about prescribing it for me, probably because she thought it might not do any good at this point, but she did go along with it and keeps prescribing it. I'm not sure it's doing any good but at least I can feel I'm doing something to keep things from getting worse. Just in case.

I don't have to pay a cent for it because I have Medicare/Medicaid. If I had to pay for it I'm sure I'd feel differently.

My SPMS was diagnosed 43 years ago. Most of the MS drugs haven't been studied for SPMS, mainly because there's no clear way to measure whether the drugs are effective by then. So I'm probably not doing much to help avoid worsening of the MS but I'm trying.

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