Primary Progressive Question

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Primary Progressive Question

Postby jam » Tue Sep 28, 2010 6:23 pm

Is anyone able to honesty say that they have halted/changed the outcome of Primary Progressive MS through diet or medication?

If so, how have you achieved this?

Your response is appreciated.

Jam
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Re: Primary Progressive Question

Postby scorpion » Wed Sep 29, 2010 5:52 pm

jam wrote:Is anyone able to honesty say that they have halted/changed the outcome of Primary Progressive MS through diet or medication?

If so, how have you achieved this?

Your response is appreciated.

Jam


I do not have PPMS but from what I have read staying as active as possible, (possibly participating in physical therapy) is often helpful with PPMS. There are also some clinical trials you may want to check out or even some that you may want to participate in but as of now I know of nothing that halts PPMS in its tracks.
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Postby tzootsi » Wed Sep 29, 2010 6:30 pm

Although it may be too early to tell for sure, but I believe there have been several PPMS'ers that have been helped by the liberation (CCSVI) procedure. Check the CCSVI forum.
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Re: Primary Progressive Question

Postby Perkele » Thu Sep 30, 2010 7:18 am

jam wrote:Is anyone able to honesty say that they have halted/changed the outcome of Primary Progressive MS through diet or medication?


I have read and seen many testimonials about LDN halting PPMS progression. There has been also one small study where they measured the safety and tolerability.

A sixth month phase II multicenter-pilot trial with a low dose of the opiate antagonist Naltrexone (LDN) has been carried out in 40 patients with primary progressive multiple sclerosis (PPMS). The primary end points were safety and tolerability. Secondary outcomes were efficacy on spasticity, pain, fatigue, depression, and quality of life. Clinical and biochemical evaluations were serially performed. Protein concentration of β-endorphins (BE) and mRNA levels and allelic variants of the μ-opiod receptor gene (OPRM1) were analyzed. Five dropouts and two major adverse events occurred. The remaining adverse events did not interfere with daily living. Neurological disability progressed in only one patient. A significant reduction of spasticity was measured at the end of the trial. BE concentration increased during the trial, but no association was found between OPRM1 variants and improvement of spasticity. Our data clearly indicate that LDN is safe and well tolerated in patients with PPMS.


http://msj.sagepub.com/content/14/8/1076.abstract

I think LDN is worth of trying...

-PERKELE!
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Postby Algis » Thu Sep 30, 2010 7:35 am

I was diagnosed SPMS and LDN made good things on me (maybe stop the progress). Since more than 2.5 years, no further (relapse/crisis/whatever) deterioration....
But I seems to be alone in that case; so it might be lucky, anecdotal (or long-effect placebo?).

Who knows...
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Postby KateCW » Wed Oct 06, 2010 2:54 pm

I recently read a study that suggested intrathecal methotrexate is helpful in PPMS. I have a call in to my MS clinic. Here is the link to the study...I think it the second one listed

http://www.msrcny.org/research_articles.php

I am also on LDN and have been for 11 months. I am not significantly worse. I think the same as last year, but I started taking aminopyridine in March and the slight edge it gives me may be masking any progression.

My family doc and I have agrred that I can do high dose oral steroids for a 10 day perid about 3 times per year. I read another study out of Brazil that suggested it slowed progression of PPMS.

If I go on methotrexate I have to discontinue LDN, and certaily can't take Prdnisone at the doses I have been

Hope this helps....
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Postby gainsbourg » Thu Oct 07, 2010 1:44 pm

Hi Jam,

I suggest all sorts of things you can do for MS in general here

http://www.thisisms.com/ftopicp-136610-.html#136610

I believe PPMS is associated with the most iron in the brain. I've also heard that Elaine DuLack's Prokarin can help.

Hope this helps

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Re: Primary Progressive Question

Postby Scotto » Fri Feb 22, 2013 1:29 pm

I was diagnosed with PPMS about a year ago. After about 8 years of doctors not knowing enough to provide a diagnosis. I am on LDN and it seems to help. I am on Baclofen and Skelaxin for leg spasims. My homeopathic doctor has placed me on high doses of vitamin D3. I did have a episode last week which sent me to the hospital for several days with high doses of solumedrol which did help for a few days. I do find that one of the things that has helped with pain and balance is physical therapy sessions in a cool swimming pool. Good Luck and hang in there.
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Re: Primary Progressive Question

Postby marcstck » Wed Feb 27, 2013 1:59 pm

Don't want to blow my own horn, but I recently wrote a blog post on intrathecal methotrexate, a treatment that was pioneered by my neurologist. The post gives an in-depth review of The treatment, and includes links to research and another patient's experience that you might find interesting and helpful.

http://www.wheelchairkamikaze.com/2013/ ... t-for.html

I tried intrathecal methotrexate, but received no benefit. My case is highly atypical, though, so I'm a terrible yardstick by which to judge any treatment regimen. Progressive MS is a very difficult beast to tame, and even CCSVI appears to be less effective in patients suffering from progressive disease. Best of luck to you, and I hope the info in my blog post is will be of some value to you.
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