PEOPLE OVER 70 WITH MS

[HarryZ]

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

Dr. Mark Freeman has done this type of therapy in Ottawa Canada and it has been quite successful for severe MS patients. I believe it is still considered experimental and don't know what kind of criteria is used to choose patients. And yes, it is quite risky because your immune system is destroyed and replaced and that leaves one very vulnerable to all kinds of infection for a period of time.

[Leonard]

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

Hi Dave,

That is correct, chemo/HSCT is the process where they reboot the immune system with chemo and stem cells.

But it is no longer a treatment you can only get done in a 3rd world country. In fact, it is now being offered/in use in countries like Sweden, Norway, Germany, Italy, Spain, Denmark, Poland and others, often as a second line treatment.

You are not alone when you write: "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." I wholeheartedly agree with you there.

Thanks

Leo

[ElliotB]

"Most doctors don't know that DMDs don't work for PPMS, even a few neurologists."

Neurologists who specialize in MS are, IMHO, the only type of doctor someone with MS should see for MS issues. A good GP should be seen regularly as would be done normally but there should not be an expectation that a GP or regular neurologist should be fully versed on matters relating to MS.

Stem cell treatments are in there infancy and are at this time dangerous (the severe ones that include chemo). There are other proven safe albeit controversial methods of dealing with more advanced stages of MS that should, IMHO, be done first before going to extreme measures.

[centenarian100]

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

thanks. Very good post. It is very encouraging to hear a lot of older people trying to make the best of their situation.

[centenarian100]

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

This is fairly accurate. The risk of relapses and MRI lesion accumulation decreases with age, though there are certainly people who have relapses, new T2 lesions, and gad+ lesions in their 60s or even 70s. It's just less common. Multiple sclerosis progression (a slow but continuous decline) is more common in older people, and it can occur very late. There are people with MS in their 70s with significant or even fairly rapid progression. There are even people with PPMS who are diagnosed in their 70s. I've met people like this at NMSS groups.

I think that a lot of people who are older with multiple sclerosis tend not to go to see neurologists for various reasons. They may have been so stable for so long that they felt it was no longer worth their time and worry. Alternatively, they may have declined despite several disease modifying therapies, so they lost confidence in allopathic medicine.

[David1949]

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

Elliot Sorry I've taken so long to respond, but I didn't see your post at first.

Shortly after I was Dxed I read the Multiple Sclerosis diet book by Dr. Roy Swank. It sounded like the best bet by far compared to the DMDs. So I went on that diet for several years. It is a diet low in saturated fat and supplemented with Cod Liver oil. At that time it was assumed that I had RRMS. Later my family doctor became suspicious because I never had relapses so he sent me for a second opinion. That Dr. concurred with the MS Dx but concluded that I had the PPMS variety. I rememeber In Swank's book he said his diet was not effective for non-remitting cases, which I believe is what we now call PPMS. So I decided to stop that diet and eat whatever I wanted.

Some time ago I went on the Whals diet for 6 months. It didn't seem to change anything so I bailed out on that too.

I've never taken any of the DMDs and I don't regret that one bit. Although I do take baclofen for muscle spasms and it does help somewhat. I wish I could get off of it because it makes me weaker during the day, but if I don't take it the muscle spasms will keep me awake all night. I currently also take alpha lipoic acid which seems to help with the muscle spasms too.

I have a closet full of vitamins, supplement etc that I've tried to no availe.

Oh yes I did have the CCSVI procedure several years ago, but it did not help me.

I will try anything that meets 3 criteria:
1) It has to make sense, so Dr. Maboto's voodoo clinic is out.
2) It has to be something that won't kill me or make me worse.
3) It can't be too expensive.

[Scott1]

Hi David,

I had trouble with the side effects of Baclofen. I only take 5mg before bed even after more than a year on it.

To help my spasticity (and it really does) I also take Dantrium as 25mg morning and night.

If you read about both products you could be forgiven for thinking they operate the same way and have the same side effects. In a sense they both are trying to achieve the same end which is to slow how quickly calcium is released from within the cell to trigger muscle proteins to make a contraction.

The method is different for each. Baclofen slows how quickly potassium leaves the cell which is a requirement to trigger the calcium. Dantrium blocks an ion channel called the Ryanadine receptor that calcium passes through to get to the muscle protein. This leaves the calcium with nowhere to go except back where it came from. Baclofen will also alter the way Brain responds to stimuli and Dantrium won't.
The downside with Dantrium is it is so effective that you will lack strength but if you do a simple range of exercises that aim to strengthen muscles in the elongated state then you will get past that stage.
Occasionally, when the weather is cold, I still pop a magnesium tablet to further relax the muscle. Magnesium also binds to the Ryanadine receptor.

If you want to try it you must exercise. If you don't then don't bother as you will just fall down stairs etc. Pilates remains my preference to strengthen muscles in the elongated state. For us that is the right way. We don't want the muscle constricted.

Regards,

[David1949]

Scott1
Thanks for the info. You just told me more than the Neurologist did. I'll look into it.

Dave