This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Everyone

I was diagnosed more than 24 years ago and am currently on Tysabri (infusion 63 approaching). I get around on my own with a cane and occasionally (now getting more frequent) use a wheelchair. I have read a number of books about MS over the years and made some lifestyle changes which didn't last. I don't have sufficient willpower.

Is it too late to consider further lifestyle changes? Am I doomed to irreversible decline?

I am not really complaining about my condition as I am still somewhat mobile but I would not like to get much worse and ideally any little improvements would be greatly appreciated. Improvement is probably asking for too much!

Any thoughts? Am I too late?

Gymbuff

Hi All

147 views and no replies I wonder is it because you have no opinion on the matter or because you think it is too late and don't want to air that view publicly? I personally think that the dietary changes suggested by some of the multitude of books on MS are so radical that they are largely for the newly diagnosed and younger person. In any event I am a very positive person will continue striving to improve my position for as long as possible. I hope that by striving to improve I will at least slow the inevitable decline

too late? - who knows. MS is totally unpredictable. Making dietary changes may or may not help, but there's certainly no risk, and minimal financial burden - so why not try it? It's really not that difficult with things like rice pasta and rice milk now readily available. Hopefully you are loading up on vitamin D? Ireland is not exactly the sunshine capital. You could always consider looking into CCSVI or ABX treatment. As you may be aware, stem cell treatment looks very promising.

Dr. Terry Wahls was in a wheelchair and SPMS....it certainly wasn't too late for her. I met her last May, and she is smart, passionate and very vibrant and up on her own two feet. Yes, her plan takes commitment and a new way of living, but it's worked for many.
http://www.youtube.com/watch?v=KLjgBLwH3Wc
At the same conference, I discussed my program and Dr. John Cooke spoke about the endothelium---Dr. Wahls said there is much crossover in our approaches.
http://www.ccsvi.org/index.php/helping- ... ial-health
hope something helps, gymbuff--
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

You have been on Tysabri for almost 5 years now. The first question I have is how are you doing now compared to when you started the Ty?

After 24 years, your MS has had a long time to progress. We know the disease can lie fairly dormant in some people for that length of time and then, all of a sudden start to progress quickly into SPMS. It's different for everyone so there is no one answer as to what your situation will develop into.

As Cheers said, Dr. Terry Wahls was not doing too well and she turned her life around. But that takes a lot of will power and dedication and you have to ask yourself if you are willing to do that to try and prevent the MS from getting worse.

Harry

Although the hill may be steeper now, I do not believe that it's too late. I believe that the more we do, the better off we will be.

Hi all
Thanks for your replies.

Harry I think I am a bit less mobile than I was then but nothing too dramatic. I am also taking Fampyra at the moment and after seeing great initial improvement in a short space of time there appears to be no further improvement since. My 3 month prescription runs out next week and I will closely monitor any deterioration (if any).


I think my main problem is lack of willpower. I rarely eat junk food but I like my meat. Dairy product are at a minimum. I exercise at a local gym 3 times a week for about 30-45 minutes.

Anyway thank you all for your replies. I was probably feeling a bit down after reading George Jelinek's book and the strictness of the diet and the exercise regime he advocated. I am really not too unhappy with my present status. After all if I had been diagnosed with cancer 24 years ago I would almost certainly be dead by now.
Gymbuff

Next question...Tysabri is usually given to MS patients who have had no success or can't tolerate the other approved DMDs. What prompted your doc to start you on Tysabri? Were you taking anything else for your MS at the time and was your MS stable or showing signs of progression?

Harry

gymbuff,
i think that if you're breathing, there is still time to improve your situation. (i will turn 62 in december).
there are no guarantees about preventing decline, there is simply the reality that ms is a progressing situation.
it seems to me that the best thing any of us can do is be as healthy as possible. meet the enemy with our strongest selves.
who wants to be fighting this battle as an unhealthy body? it is a hard enough fight in any event.
good luck to you.
elyse

Hi Harry

I took nothing for the first number of years and was so good that I thought the diagnosing Neuro had made a mistake and looked for a second opinion. The 2nd opinion confirmed MS and the doc suggested that I start some medication (he said that I was lucky to have escaped for so long without any meds). But in hindsight I can see the slow decline. I started Betaferon shortly after that. Nothing major happened during the time I was on Betaferon, 3 or 4 major flareups I think. Steroids sorted them out. I asked for the change to Tysabri. The reports weren't that bad (if you discount PML) and in fact sounded quite promising. I have only had 2 flareups while on Tysabri and they weren't really that bad.I decided that the risk was worth it and the prospect of an infusion every 4 weeks was also appealing after years of self injecting every other day.

I feel that my current position is a slow but steady decline. I will keep fighting to slow it down further or even halt it and any help or suggestions will be gratefully received bearing in mind that I do not have great willpower for the long haul. I can be very determined in the short term.

Anyway thanks for listening to my novel.

Gymbuff

Hi Gymbuff,

My wife had MS for some 36 years (she passed away in 2007 from other complications). After her initial severe attack and diagnosis, she went about 20 years without taking anything (there wasn't anything to take back then) and there was little if any progression. Then in the mid 90s, the MS started to slowly return. Her neuro, who was part of the DMD trials, told her not to take any of them because they wouldn't do her any good. He also told her (because she was a nurse and he knew her) that in general, the docs were quite disappointed in the DMDs and they weren't doing what the drug companies told them they would accomplish.

Recently, there was a study published out of the University of British Columbia. It looked at thousands of MS patients over a 10 year time frame and determined that there was no difference in disease progression from patients who used the DMDs and those who took nothing! Not good for the DMD makers. The fact that you had 3 or 4 major attacks while on Betaseron confirms that...in your case anyway.

As for Tysabri...those who know me on this forum know that I am not a proponent of that drug because of the way Biogen, the maker, introduced it. But like I always state, each MS patient must decide for him/her self if they want to try it and see what happens. It is a personal choice for sure. Hopefully it will help you.

But at the same time, I would certainly make the effort to change your lifestyle to maximize the other things you can do to help your health. Being as healthy as possible is very important in fighting this disese.

Harry

Dear gymbuff, don't blame yourself about "willpower". Most of the aforementioned methods are practically not effective in terms of mobility. So, it is not lack of willpower but effectiveness. They may indeed have a positive outcome for some people, but only studies could shed light on what is really happening. What makes me angry is the fact that there are tiny little details and the fans of each method try to find which one was not followed by a patient that had no result. Sometimes, it gets ridiculous.

I don't want to flame or anything. I only want to tell gymbuff not to blame himself/herself. Taking care of your body is always a good thing, but unfortunately miracles are not to be expected in real MS. Try to keep your quality of life to the maximum possible level. It is MS that should reduce the QoL, not the treatments.

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."