Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Wednesday, February 5, 2014

Newly diagnosed are healthier today than a decade ago


Dr. Lawrence Steinman recently made a very interesting comment in an article on vitamin D levels in MS progression. (Dr. Steinman, MS researcher and inventor of Tysabri, is now behind the upcoming clinical trial of Lisinopril, an inexpensive generic blood pressure medication, as a treatment for MS.)
 http://ccsviinms.blogspot.com/2013/08/medications-for-ms-addressing-blood.html


Dr. Steinman noted that there has been a decrease in relapse rates in the placebo end of MS drug trials over the last decade.


"I might wonder if these data might explain the progressive decrease in relapse rate in the placebo arm of clinical trials of MS over the past decade. Maybe more and more individuals are aware of vitamin D, and that they are taking vitamin D supplements, thus lowering the relapse rate in placebo arms of trials."
http://www.medpagetoday.com/Neurology/MultipleSclerosis/43899

That's right.

People who are diagnosed with MS today are having less relapses than people diagnosed a decade ago---without being on a disease modifying drug.  These patients were in the placebo end of trials, and not getting the real medication.

What does this mean?  I believe it means the self-help, or "alternative" information is getting out there, thanks to the internet.  People with MS are sharing information, and getting healthier.

When Jeff was diagnosed seven years ago,  I asked his neurologist to test his Vitamin D3 levels.  I had been reading research on Dr. Ashton Embry's website, Direct MS, 
http://www.direct-ms.org  and wondered about the correlation.  His neurologist said it didn't matter.  Neither did diet or exercise.  MS was an immune-mediated degenerative disease, and there were no scientifically proven means, aside from disease modifying drugs, to slow disease progression.  Case closed.  Good luck.

We got Jeff's GP to order the test, although we had to pay for it, since our insurance didn't cover vitamin D testing.  Sure enough, his level was very low at 15ng/mL  He began to get more sunshine exposure, and take a D supplement w/magnesium and zinc, and the next time he was tested, six months later, his level was at 70ng/mL.  He felt better, too.


And today, we have research showing that Vitamin D levels really do make a difference.  So important, that it is now part of my insurance's paid complete blood testing.  This is new!

But I would submit that it's not just about Vitamin D.


We also have Dr. Terry Wahls, Dr. David Perlmutter, and Dr. George Jelinek sharing their knowledge about nutrition and the importance of a whole food diet and exercise with their large online communities. T
here are self help groups on websites like This Is MS and Facebook encouraging healthy lifestyles.  Information for newly diagnosed patients now includes nutrition, exercise, Vitamin D, smoking cessation, and stress reduction--and this advice sometimes even comes from the neurologist or the MS Societies.  I hope I've made a small contribution in discussing the endothelium and vascular connection to MS, and by bringing Dr. Zamboni's research to the states and connecting new doctors to the ISNVD.


What a change from only seven years ago!!


When Dr. Roy Swank first noted what he called "capillary fragility" in the 1950s and designed a diet and exercise program to deal with the hypercoagulated blood he found in his MS patients, he was decades ahead of the discovery of nitric oxide and endothelial health.  His patients had fewer relapses and slower MS disease progression in the era before the DMDs.  His contribution to helping MS patients was called "junk science" and he was labled a quack by neurologists.  Yet 60 years later, we see newly diagnosed RRMS patients incorporating whole food diets, vitamin D and exercise--and doing better.


I've said this before, I'll say it again.  Don't wait for your neurologist to tell you that the "science is finally in."  Take your life and health into your own hands today.  Move every day, eat well, get UV rays and supplement D3, laugh and find ways to reduce stress, don't smoke, get a good night's sleep, take care of yourself.


Because in seven years----it may well be a whole new world,
Joan


8 comments:

  1. Per migliore qualità del sonno, minor stato d'ansia, miglior memoria, migliore collagene ed elastina, minor produzione di radicali liberi, maggiore e migliore carburazione biochimica nei mitocondri fornaci delle nostre cellule,rigenerazione tissutale e ripristino cellule endoteliali, utilizzare, mia scoperta, bevanda anche ottima, con sbattimento di micro polvere di osso di seppia con succhi di pompelmi o limoni, bevanda tutta schiumosa e bianca. In sinergia, utilizzare, semi di lino e semi di finocchio selvatico, ammollati o germogliati, polvere gialla di Ginkgo Biloba, solo foglie gialle, olio di oliva biodinamico, giallo Oro, da olive mature, da polpa viola fino al nòcciolo, o, ancora meglio, olive mature fresche o, durante l'anno, le stesse disidratate in aria, in cassette forate basse ed impilate, dismesse dai supermercati , o a temperatura di max 35°- 40° gradi centigradi, in forno ventilato e poi, le stesse, conservate sotto vuoto, molta frutta selvatica di bosco, succhi centrifugati di àloe o di Cladodi opuntia, portulaca, in succhi o insalata verde, con polvere di curcuma e mini polvere di pepe bianco, giammai nero, eliminando, alimenti e bevande industriali, in primis carne, latte, tutti i loro derivati, fumo tabacco industriale. leggere molto attentamente : https://www.facebook.com/notes/francesco-paolo-ruggieri/polvere-bianca-del-guscio-di-ostrica-e-madreperla/386245404722275 ; e mie note generali, su Note mia bacheca di Facebook : https://www.facebook.com/francescopaolo.ruggieri/notes

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  2. Thanks again Joan, keep being awesome!!

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    1. thanks, dan---maintain your level of awesomeness as well! :)

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  3. Here in Australia there are MS patients on drug trials who have also accessed CCSVI treatment. Could lead to an overestimation of the effectiveness of the drug

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    1. Hi Helen--just saw this question. It certainly is a good one! Also, exercise and better nutrition might be having a favorable effect on drug trials. Impossible to know. We just have to keep getting the information out to patients...and hope for the best!

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  4. Thank you Joan. I sure appreciate your posts. XX

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    1. You are welcome, Beth!! I appreciate your kind words and support. xoxox back atch'a!

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