My neuro says don't need DMT since no changes in MRI in 2 years

[purpletustin]

I'm 73 and not taking a disease modifying therapy (DMT) for 2 years. 1st symptoms in my 30's, but not diagnosed till 64. Had the usual dumb diagnoses from multiple docs, fibromyalgia, stress, obesity, list goes on and on. I was on Copaxone for 7 years and did great with it, until I didn't. Balance, fatigue, etc. So previous neuro had me going to PT, Ampyra, etc. Current neurologist, we think he needs his own neuro! tells me 2 years ago I'm moved on to Secondary Progressive. Next visit with him, tells me he's not sure I even have MS. I produced reports from spinal and he then says, 'you absolutey have MS'. In the interim, having MRI's. For last 2 years, no new lesions, but continuing decline. Can't even make it through Costco. Now that's panic if there ever was. Couple of falls, 2 broken elbows, cracked skull. Doc says use a walker. Eh, he has little credibility with my husband and I.

I've asked him about various DMT's and he says "if my patient is doing well, you don't need to be on a DMT. Um, did I mention he had me tested for some awful disease with a life expectancy of 1 year..... Each time I see him he brings it up and I remind him I had the test and it was negative. Each time, he apologizes, he'd forgotten.

Has anyone heard that DMT's aren't needed for someone who is 'stable'?

[KC0808]

Second opinion from a doc who specializes in MS if your questioning what your hearing and you know what your body is telling you it's time.

I truly wish you the very best and I hope you give an update on how your doing.

Take Care of You

KC

[bxrmom]

Time for a 2nd opinion, no dmts doesn't sound good, especially if you are falling a lot. And if this doc keeps recommending other things and you have to remind him and show proof its time for someone new.

Keep us updated. Wish you luck on finding someone better than this guy.

Jessie

[greaterexp]

I have heard that some doctors decide to stop DMTs in “older” patients who seem stable. But there are others who think it’s best to be vigilant about preventing relapses. I understand that if you have transitioned to SPMS, it’s a different ballgame.

I’m very concerned about your doctor and hope you will consider looking for a new one. A list of letters after one’s name does not mean competence.

Let us know how you’re getting on and if you find a new neurologist, especially one who specializes in MS. We surely have to be our own advocates.

[Kenu]

Yes, I think it’s time for a second opinion or new neurologist. He sounds confused 🤷🏼‍♂️ Not good for you. 🙏🐾. Ken

[BigMar7]

I also have left taking Copaxone which I had taken for the first 12 years of my diagnosis. But my doctor, when I first tried it looked at all my MRI results for all 12 years and said let’s try it. I did an MRI 6 months after no shots,saw him again and I’m good to go till January when I will do another MRI and see him after that. He is a MS specialist and I also agree with Ken that you need to a second opponion. 😀❤️

[purpletustin in reply to BigMar7]

Thanks so much for your input. Not many MS neuro's in my area, but certainly in driving distance. I'll probably pursue a new one. Best and thanks

[Lucky1313 in reply to purpletustin]

I was wanted to know if anyone is on Tecfidera. Its a pill. Thinking about switching and wanted any feedback on it. Thanks.

Lucky1313

[goatgal]

purpletustin When I was dx at age 70, the neuro told me not DMTs were proven useful in the elderly. Since then (8 year later next month), four different neuros (2 of whom were MS specialists) have told me much the same. As we age our bodies metabolize drugs differently. I did attempt Ampyra but had an adverse reaction, similar to the high dose flu vaccine for seniors. I have no reaction to the regular dose of flu vaccine. I am fortunate in that the MS progression for me is very gradual. If possible in your region, do seek out a neuro with MS specialization: in general, they and their NPs are SO much more helpful.

[purpletustin in reply to goatgal]

Hi Goatgal, your response so welcome. While my MS neurologist is questionable, he's saying what your docs are saying. In our age group, the negatives of DMT out weigh the positives. Last night i did a google search on this issue and surprised to find corroboration of what you've been told.

Also, I'm finding it hard to figure out what's MS related versus age related.

Appreciate your info. Very helpful!

[FearlessMsMimi in reply to goatgal]

This is so true, I spoke on the road with Aubagio and many actually said once you’re in your 70’s get off all meds and enjoy life.

[purpletustin in reply to FearlessMsMimi]

Thanks for your wise reply. I'm getting more open minded about being off all DMT's. I've had no other source for learning from other MS people in my age group until asking on HealthUnlocked.

Very grateful for these responses.

[mrsmike9]

Wow! My first thought is "stupid doctor"! I've not had a change in my MRI in 4 years but last year was not sent my meds on time and went into a huge downhill slide! I will NOT go without my meds! Find a neuro who specializes in MS and get another opinion.

[Hidden]

I saw a neuro once would said he didn't believe in treating flares because they would go away on their own. First and last time I saw him.

[BettysMom]

I stopped Avonex 3 years ago when I was 67. I am very glad I did.

[FearlessMsMimi in reply to BettysMom]

I’m happy to see your response, my thoughts are everyone is different and I probably will stop my meds once I’m over 70 if I don’t have any flares and I’m stable on my MRI’s; meaning no new lesions. But I also wonder if an old lesion can become active again if aggravated. My guess is yes. So with that being said it will be a guessing game like all studies, research and individual body makeup.

[Humbrd in reply to FearlessMsMimi]

Just wondering, why if over 70 to stop all meds including dmts? What is the benefit of stopping?

[FearlessMsMimi in reply to Humbrd]

Maybe this will answer your questions:

consultqd.clevelandclinic.org/

[purpletustin]

Purpletustin here. I've been off DMT's for about 4 or 5 years. I'm 76 and it's hard to know if any issues I have or develop are due to MS, aging or obesity. I'm still upright and use canes or walker when needed. A few times I've used my scooter. My mind is still pretty sharp, memory is nothing impressive, even though it seems to be getting a little better of late which previous testing gave me a low percentile score.

I get an MRI every September. Due to Covid, etc. haven't seen my neurologist in about 2 years. If I felt anything real serious I could reach him.

I've discussed the older person (me) being off DMT's and general consensus has been that as we age, very often DMT's don't help much. Got this from 2 MS specialists as well as few MS friends. Wishing all of you peace in this threatening surrounding.

[carolek572 CommunityAmbassador]

Welcome to the forum, purpletustin

You have been through so much, and to not feel comfortable with your neurologist is only adding to your uneasiness. Can you look around for another neurologist that you can have confidence in? There is a lot of informative on mymsaa.org and there is a search available for finding medical professionals available in your area.

Again, welcome, and I look forward to hearing more from you. Keep Smiling