PEOPLE OVER 70 WITH MS

[Bluejeans]

I am curious to know how many people with MS are now over 70 years old.
If you are, or know someone who is, please respond with a simple yes and how many people you are representing.
I will also post this on the CCSVI discussion, so please don’t answer twice.
Thank you.

[coach]

thought MS was usually dx'd in younger folk. am suprised by older folks that are dx'd with it. makes me wonder about what ms is. know it's mri profile and symptyoms . seems like it's a disease that's managed at best and seems to be a money maker for drug companies. fear mongering by docs seems to be m.o. but nothing has been proven. reliance on EAE animal model seems to guide research. EAE can be cured but MS can't.

[HarryZ]

I am curious to know how many people with MS are now over 70 years old.
If you are, or know someone who is, please respond with a simple yes and how many people you are representing.
I will also post this on the CCSVI discussion, so please don’t answer twice.
Thank you.

I knew of one lady in her 80's with MS that passed away last year from other complications caused by sitting in a wheel-chair for years.

Often, people who have had MS for many years end up getting other diseases/problems due to the lack of mobility and being wheel-chair bound or bed ridden.

And if you are diagnosed with MS in your 70's, then you likely have a very mild case of the disease.

Harry

[elyse_peace]

i was told by a neurologist that ms stops being active at around 60. his explanation was, "there may be pwms in their sixties, but i don't see them in my practice.
at that age, you'll be dealing with aging issues.
when i saw my next neurologist, i asked him if this is so. he agreed that it is.
well, not in my experience. i am 62 now. i feel sure that although i have difficulties in common with others my age, i also have to deal with things most would not even wish to imagine.
best to you. hang in there.
elyse

[blossom]

never heard anything about symptoms slowing up after 60. my case things seem to be getting worse faster. especially after ccsvi t. and yes, most can not imagine dealing with some of the things i do. at this point there is not a lot left for the imagination and not much left that's sacred. "but, i keep trying to keep the attitudide that where there is life there is still hope." and that is a challenge sometimes.

[cheerleader]

We have a family friend who is 80, has had MS for 50 years, is still walking, active and very vital. She obviously had a more mild case of the disease--but this wasn't obvious to her in the beginning of her disease, only in retrospect. She reminds me of Anne Romney, who is now 63 and doing very well. So much we do not understand about progression.
cheer

[dlynn]

my sisters' mechanic was diagnosed with MS 6yrs. ago, he is now 72 and walks with a cane.

[elyse_peace]

ATTITUDE

The longer I live, the more I realize the impact of attitude on life.
Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failure, than success, than what other people think or say or do.
It is more important than appearance, giftedness or skill. It will make or break a company … a church … a home … a life.
The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past … we cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude.
I am convinced that life is 10 percent what happens to me and 90 percent how I react to it.
We are in charge of our attitudes.
Rev. Charles Swindoll

[70andcounting]

I agree with the comments about attitude. We can't change what is, but we can control the way we react to our disease and our symptoms. I'm 70 now, diagnosed at 54, first went to my family doctor at age 44 with what we now know were clearly MS symptoms. Can look back and see that I probably experienced early symptoms at about age 35. For the first 20 years, MS did not affect my life other than raising questions about why odd symptoms were happening. From 54 - 60 I began to develop symptoms that affected my lifestyle -- increased fatigue, difficulty maintaining an exercise routine,etc. I have also heard that MS progression slows dramatically in the latter years. That has not been the case for me. In the last 10 years, I have gone from using no assistive devices to "wall walking," then a cane, then a rollalator, then to a walker and an electric scooter for longer distances. I am now on my third set of leg braces. When I feel down about this accelerated progress, I find help in directing my thoughts to all there is to be thankful for in my journey with MS -- a loving helpful family, an excellent team of medical professionals, wonderful primary and secondary insurance, a house designed for handicapped access, ability to drive with hand controls, the opportunity to be employed part-time, etc.

[lyndacarol]

I agree with the comments about attitude. We can't change what is, but we can control the way we react to our disease and our symptoms. I'm 70 now, diagnosed at 54, first went to my family doctor at age 44 with what we now know were clearly MS symptoms. Can look back and see that I probably experienced early symptoms at about age 35. For the first 20 years, MS did not affect my life other than raising questions about why odd symptoms were happening. From 54 - 60 I began to develop symptoms that affected my lifestyle -- increased fatigue, difficulty maintaining an exercise routine,etc. I have also heard that MS progression slows dramatically in the latter years. That has not been the case for me. In the last 10 years, I have gone from using no assistive devices to "wall walking," then a cane, then a rollalator, then to a walker and an electric scooter for longer distances. I am now on my third set of leg braces. When I feel down about this accelerated progress, I find help in directing my thoughts to all there is to be thankful for in my journey with MS -- a loving helpful family, an excellent team of medical professionals, wonderful primary and secondary insurance, a house designed for handicapped access, ability to drive with hand controls, the opportunity to be employed part-time, etc.

Welcome to ThisIsMS, 70andcounting. You are a great asset to this website – you have valuable information and experiences to share with us.

[NoCouchTherapy]

This will be my 28th year and I am 70.6 years, female and walk with a cane - spend a good amount of time in a sedentary lifestyle. My fragility is growing but then again much of this would happen with age. Fortunately, I was able to transition my therapy work to a 'work from home' telephone counseling business and still support myself. The fatigue continues to plague and often wins. In recent years it seems the MS has weakened my heart, immune system and my transition team sees cognitive challenges beginning to encroach however, adjustment seems to be the path. Very grateful to learn of others over 70 dealing with MS. It is helpful. Doc

[David1949]

Earliest symptoms started at age 45. Dxed at age 47. I am 67 now and still walking with a cane and leg brace, but just barely. Still drive my car. Driving is not a problem. Recently had a stair lift installed as it was becomming difficult to walk up or down the steps. My grandkids like riding on that. They call it grandpa's rocket to the moon. It's really slow though.

I have the primary progressive variety of MS. The progression of disability has been mainly a straight line sloping upward, gradually becomming worse.

Having a supportive family and friends helps.

[ElliotB]

David, can you share with us a bit about your history as far as diet, exercise and medications are concerned?

[Leonard]

Earliest symptoms started at age 45. Dxed at age 47. I am 67 now and still walking with a cane and leg brace, but just barely. Still drive my car. Driving is not a problem. Recently had a stair lift installed as it was becomming difficult to walk up or down the steps. My grandkids like riding on that. They call it grandpa's rocket to the moon. It's really slow though.

I have the primary progressive variety of MS. The progression of disability has been mainly a straight line sloping upward, gradually becomming worse.

Having a supportive family and friends helps.

David, I was diagnosed at age 47 as well.
In fact, it seems I sail much of the same course than you do.

I am now 60 years old, still walk around a bit with a stick and I can climb the stairs.
But if the progress continues "along a straight line sloping upward", at 67 I will be like you or worse.

I am seriously considering HSCT now as a way to stop the progression and to get back some of my lost abilities.
The testimonies from other progressive patients who had HSCT are really very very encouraging, coming back from EDSS 6 to 2 after 3 years.
To this end, I think Terry Wahls who had several cycles of mitoxantrone (also a chemo) and then got out of her wheelchair is just one example of the importance of chemo to stop MS progression.

Unfortunately, there is still a lot of pollution in the debate.
https://multiplesclerosisnewstoday.com/ ... ransplants
Regardless what neurologists and researchers want you to believe, there is no disease modifying treatment that can offer that same prospect as chemo.
While the new disease modifying drugs will still need to go through a lengthy trial phase to show .... that they don't really stop progression or don't offer the same prospect than chemo/HSCT.

As an informed patient, I would like to have but HSCT here in Belgium.
They could do it tomorrow, they do it every day for cancer patients.

But neurology here in Belgium does want to give it to me.
Therefore, I am forced now to look abroad.

[David1949]

Hi Leonard
You're right, most doctors don't know that DMDs don't work for PPMS, even a few neurologists.

Is "chemo/HSCT" the process where they kill off your immune system with chemo and then reboot it with stem cells?

You could probably get it done in Mexico or other 3rd world country. But I'm not sure we should trust them with such a potentially dangerous procedure. It should be available here in the US, but the FDA and Institutional Review Boards won't allow it. They claim they're protecting us but they don't have an alternative, so they just might be protecting us to death. In my opinion we should be able to make an informed desicion about our own lives without interference from the bureaucrats. But that's just me.

I wish you smooth sailing with whatever course you chart.

Dave