AGE

[Bobomarie]

67-lookin's forward to 68

I've been on Avonex since official diagnosis at age 53, many symptoms before that but with an HMO guarding the referrals....

My current neuro has suggested a switch to oral meds, as I'm having increasing needle fatigue. He has no difficulty telling older patients with MS to stay on DMT meds, said with the good track record I've shown, why stop? The age factor was not mentioned and he's an MS specialist.
Cheers.

[Special Kay]

I met a man at a holiday party last year who had just been diagnosed with MS at about age 63 (I can't remember his exact age). He looked and seemed quite well though he had recently decided to take retirement, I think for reasons of fatigue.

I didn't see him again until this summer, when we both attended a friend's concert. The progression of his MS is astonishing. In about 6 months, he went from no visible signs to walking haltingly with a cane and exhibiting other signs of disability in his speech, cognition, etc. Basically, he now looks like someone suffering from a terrible disease.

Not to scare anyone but, yeah, I don't think MS cares how old you are.

[bjrnewlife2013]

My own Neuro, who I believe I will be firing soon has never said one way or the other how long to say on meds and I am 57. Having an issue with severe fatigue right now. More blood tests this morning. Can hardly wait---NOT.

Another Neuro that spoke at a seminar a few months ago said as long as they are working keep taking them no matter how old you are.

[sudired]

Sudired

Responding to Cat Mom. I'm almost 65, diagnosed in 1986. Yes, that's 28 years and I'm still RRMS. On my feet, using a cane for balance outside, and traveling as much as possible. Remarking on the doctors' opinions that after 60, MS is likely to "burn out" . I agree that the only thing that has "burned out" is my patience at such outrageous remarks. When I was first diagnosed, the doctor told me "to just go home and learn to live with it".....well, that was 28 years ago....

[onlyairfare]

As I said, I love my work so I plan to continue as long as possible. Realistically, I also think about health care costs, so it's especially important to work as long as possible - to keep private insurance in addition to Medicare when I am 65, to afford the costs of care.

It's kind of like when I explained to my son that because of my MS I need to rest a lot, but at least I can read while I am resting. He said "Oh. I just thought you like to read." Well, yes, but....

[Jules A]

My neuro believes in the "burn out" theory, thinks I have "benign MS" and have burned out (ie, he thinks I probably won't have more relapses), but he still wants me to continue DMT - even after I failed both Gilenya and Aubagio due to side effects.

So here I am at age 63, back on Copaxone and no plans to stop DMT. I love my work and plan to continue at it as long as possible, hopefully to age 70. My neuro is knows this and so he is emphatic that I should stay on meds.

It always warms my heart to hear you are still working at 63!

I am gingerly hoping/praying to make it to 62. I didn't have any intention of working longer than 62 that pre-MS but now post-MS I worry I might be delusional to hope for that long.

[onlyairfare]

My neuro believes in the "burn out" theory, thinks I have "benign MS" and have burned out (ie, he thinks I probably won't have more relapses), but he still wants me to continue DMT - even after I failed both Gilenya and Aubagio due to side effects.

So here I am at age 63, back on Copaxone and no plans to stop DMT. I love my work and plan to continue at it as long as possible, hopefully to age 70. My neuro is knows this and so he is emphatic that I should stay on meds.

[Jules A]

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.

I usually tend to side with the provider but absolutely agree with you in this case.

The other thing patient's might consider is that we shouldn't let fear prevent us from using good common sense and a quick google search.

I think there are times when patients are content to be spoon fed lukewarm explanations....such as go ahead and have a baby without worrying about passing MS along to it.

[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.

[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.

[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.

[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!

[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

[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.

[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.