AGE

[skinner]

My Neuro says when I turn 60 that I can quit my meds. Anyone else ever been told that.

[tspaulding]

No I have not heard that and there are older people on this site who take meds.

I would ask neuro why he thinks that and maybe get a 2nd opinion. MS has no cure and its a progressive disease.

Dx RRMS in 1995 at age 21

[Marco]

Some patients have been told their MS may "burn out" when they get older. The neurologist may transition the patient from RRMS to SPMS. In SPMS, relapses normally decrease or even disappear. First-line medications are not as effective for SPMS patients so a neurologist may simply suggest to stop medications. Other neurologists may move the patient to second-tier medications hoping to decrease brain atrophy and reduce disability progression. There was a recent thread on RRMS to SPMS transition. http://www.msworld.org/forum/showthread.php?t=133496

I otherwise do not know of any standard protocol where medications are terminated at a specific age. The neurologist may have his own guideline, or may have been specifically suggesting that in your case. I'm curious to find out more about this.

[Jules A]

I haven't heard that either.

If I'm still mobile and happy when I'm 60 I plan to keep taking meds that hopefully might help keep this horrid disease at bay.

[dm0329]

At this years neuro appointment, I asked my neuro if Avonex was for life. Not for life; he told me that Avonex can be stopped by mid-sixties.

Avonex has neuro-protective properties, and recommends staying on it until mid-sixties, I suppose. I started Avonex in September 1997 (3 years after dx in 1994).

I've had a few minor relapse while on tx, but my MRIs have been stable. My progression has been slowed. My neuro told me "you'd never know how bad your scans are by looking at you."

I guess it's that "you look so good" back-handed compliment. Doctors should know better!

[1936siols]

Age

I would definitely say if you are 60 and meds have helped you do not stop them. If they have not helped then they probably won't. I am well beyond 60 and I have developed some severe problems in the last few years that I did not have before 60. I tend to trust my own body before the Neuro words of wisdom.

[jackiewolf]

My husband was diagnosed at 60. The neurologist told him the same thing - that at his age MS would not progress. He actually told him he would not end up in a wheelchair! After 2 years and multiple flares we changed doctors and my husband was put on Copaxone, he had a major flare that left him in a wheelchair. He then went on Extavia which he had a bad reaction to, then Tysabri. He is 65 and has been in a wheelchair for 2 years as he never recovered from the last relapse. The doctor said that he would need to stay on Tysabri at least another 2 years depending on his MRIs. He had his first good MRI since he was diagnosed after 6 months on tysabri. I can't imagine not fighting this disease . . .

[Jules A]

My husband was diagnosed at 60. The neurologist told him the same thing - that at his age MS would not progress. He actually told him he would not end up in a wheelchair! .

While I do not doubt for one second that he said this to you I am floored any physician would actually make a claim like this about a disease as variable as MS.

[jackiewolf]

The first thing my husband said to the MS doc when we got the diagnosis was - well doc when will I be in a wheelchair? The doc looked him straight in the eyes and told him that he would never wind up in a wheelchair. He told him he was too old to have active MS. I must say that his response gave me a sick feeling as I was shocked to hear that kind of response from THE MS doc in our area. I thought his remark and treatment course for my husband was arrogant. Our daughter was also diagnosed with MS last year. The lack of knowledge about this disease is so frustrating.

[loopey]

I was 65 when I was diagnosed 2 years ago. My neuro didn't want to dx MS because of my age but after all the tests he had no choice. I have progressed since then and feel sick every day, my balance is worse, I have sensory issues that are new since my dx among other things. So, even at my age the disease is progressing. I wish it would "burn out" but I don't believe that for even a minute.

[Cat Mom]

Never heard this one... I'm 49, dx at 40... no sign of anything burning out, except me!

The only sense I can make of this is by the time I turn 60 there will be so many other things wrong with me that MS won't seem too bad!

Jen

[Tawanda]

The only sense I can make of this is by the time I turn 60 there will be so many other things wrong with me that MS won't seem too bad!

Jen

I was thinking the same thing reading through these posts, but did not know how to word it...thanks!

[Tawanda]

Our daughter was also diagnosed with MS last year. The lack of knowledge about this disease is so frustrating.

I am sorry to hear this. My mother had M.S. and so do I. No 2 cases of M.S. are alike even in the same family. My mother progressed quickly into a chair while I'm still standing 10 years after diagnosis...good luck to your entire family.

[kelm10]

disgusted

While I do not doubt for one second that he said this to you I am floored any physician would actually make a claim like this about a disease as variable as MS.

This makes me completely disgusted with those in the health care profession would do this to a patient and in my opinion should be reported to the state medical board in your state. I think that is the only way this is going to stop.

Be your own advocate and educate yourself. Never be afraid to question any physician if what they are saying does not make sense. And, any good doctor should welcome a second opinion. Mine sent me for second opinion with out me asking. But, he does not work at a major MS center, but, is a MS specialist.

[ru4cats]

I raised the question of need for DMD's after 60 with my neuro at my last appointment since I'd heard the same thing. My neuro's response was, "If it ain't broke, don't fix it."

Ty is working for me, and I have no problem with my infusions. I'm stable (no relapses, no new lesions, no enhancing lesions, and no drug reactions) so why take the risk of stopping? I'm content to stay on Ty forever, if necessary.