Awaiting Prognosis Looking For Advice From MS Patients

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby jimmylegs » Mon Jun 09, 2008 8:52 am

there's a thread for that here under general discussion, recent. should be easy to spot i haven't nabbed the link prior to responding sry. but the discussion has some additional external links you may find useful.
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Postby Nick » Fri Jun 13, 2008 2:16 pm

Hey kyleb

I often post a note such as this to folks who are either newly diagnosed with MS or are probable with or suspicious of the condition.

An insidious aspect of MS can be that it is not formerly diagnosed until the neurological damage becomes so pronounced there is no other reasonable explanation. I would speculate that this scenario of waiting for more symptoms to arise has characterized many of us with MS. Unfortunately this is not in a patient’s best interest yet it is a fact of the insurance driven medical world we live in.

Obviously it is crucial to halt or slow any further neurological progression as much as possible before serious nerve damage occurs. Aside from or in addition to drug therapy, there are choices to address your MS that are inexpensive, safe and easily incorporated. Moreover the MS medical community is ever so slowly recognizing that MS can easily be prevented with safe, simple and low cost measures.

As controversial as the last statement seams, vitamin D has been recognized to positively regulate the immune system from attacking self and that levels of vitamin D intake, that were not long ago thought to be toxic, are now seen as harmless. The key remaining relationship to be recognized is at what intake of vitamin D results in optimal protection from MS. Dietary proteins have also been demonstrated as having the ability to confuse the immune system into attacking self by molecular mimicry.

Should you have MS, you are in the relatively early stages of your disease process (at least as far as symptoms go and at this juncture, it appears as if your symptoms are a consequence of nerve inflammation rather than damage to the nerve itself). This is positive as halting the disease process can yield a full recovery when inflammation decreases as opposed to the state of nerve damage which will persist irrespective of stopping the disease mechanisms. The same elements that induce prevention of MS will also have an effect on active disease progression.

Roger MacDougall is one such individual who induced remission and then enjoyed the benefit of his body repairing itself, from what was most likely nerve inflammation, to full recovery despite his one time wheelchair status.

Because of the success I have attained in controlling my MS I have become a participant in the efforts of DIRECT-MS (Diet REsearch into the Cause and Treatment of Multiple Sclerosis). Since our inception in 1997,one of our goals was to sponsor a clinical trial which will put to test the theory of causal dietary proteins, essential fatty acid deficiency and a deficiency in protective vitamin D3. As the research category at our site details, we have initiated a clinical trial in Scotland, applying diet revision for intervention of early stage MS, that is completed and will be presented this fall in Montreal. We have also finished the vitamin D trial in Toronto which was a Dose/Safety Study of Vitamin D for Persons with Multiple Sclerosis. It was conducted to determine the optimal dosage of vitamin D to use for future clinical research to test the effectiveness of vitamin D for preventing and treating MS. I’m happy to report that even at ridiculously high daily dosages as 40,000 IU/d, no adverse effects were created. We advocate that to prevent and actively manage MS a daily dose of 4,000 IU/d is needed.

As a quick self analysis, if you regularly consume one of more of gluten, dairy, legumes, eggs or yeast and do not get 4,000 IU/day of vitamin D3 or its equivalent (this intake equates to a minimum of an internal concentration of 100 nmol/L), then you will find the information at our site of great relevance.

The body of evidence and my own experience dictates that prevention, of not only tissue damage, but also the entrenchment of autoimmunity against self, is the best manner to deal with an autoimmune disease. Even though you have might have active MS, the absence of serious nerve damage bodes well for an effective response to this regimen. Perhaps only such simple measures as getting enough vitamin D3 and omega 3 fatty acids with minimal saturated fat intake will be enough do it for you.

Good fortunes

Cheers
Nick


DIRECT-MS material

Booklets

Direct-MS produces information booklets on various aspects of multiple sclerosis. These booklets are listed below and a PDF of each one can be opened and downloaded by clicking on the title. Alternatively we can mail you a hard copy of any of the booklets. Just writeor [email="info@DIRECT-MS.org"]email[/email]us and let us know which ones you would like sent to you. Don’t forget to include your mailing address. There is no charge for this service.

Booklet #1 Take Control of Multiple Sclerosis
This booklet discusses the main causal factors of MS and, with this information as a guide, it lays out our recommendations for nutritional strategies to help control MS.

Booklet #2 Protect Your Family from Multiple Sclerosis
This booklet emphasizes the high risk for contracting MS of first-degree relatives of persons with MS. It discusses the causal factors of MS with special emphasis on vitamin D deficiency as a primary cause. Finally it demonstrates that adequate vitamin D can likely prevent MS in most cases and provides a recommended supplementation regime.

Booklet # 3Multiple Sclerosis: The Alberta Disadvantage
This booklet demonstrates that the province of Alberta, the home of DIRECT-MS, has by far the highest rates of MS in the world: Prevalence 340/1000,000; Incidence 20/100,000.
Data and arguments are provided to support the argument that the main reason for the “MS Epidemic” is that all the main causal factors are present in Alberta, with low vitamin D supply being especially problematic.

Presentations

We have found that a Voiced PowerPoint presentation (‘Webcast’) is an effective way to communicate the science and the recommendations for nutritional strategies for controlling MS and preventing it in the first place.

Our latest presentation is Potential Therapeutic Characteristics of Pre-agricultural Diets in the Prevention and Treatment of Multiple Sclerosis. The presentation is narrated by Dr Loren Cordain of the Colorado State University. Dr Cordain is a world renowned expert on health and the original human diet and is the author of the “Paleo Diet” and “The Paleo Diet for Athletes”. He explains how returning to a diet based on lean meats, seafood, fruits and vegetables can prevent and help treat MS and other diseases such as Rheumatoid Arthritis and Crohn’s Disease.

Our third webcast is Prospects for Vitamin D Nutrition. The discussion is narrated by Reinhold Vieth of the departments of Pathology and Laboratory Medicine, Mount Sinai Hospital and Laboratory Medicine and Pathobiology, University of Toronto.
Dr. Vieth addresses the topics of:
Vitamin D and Human Evolution
Clinical relevance of higher vitamin D intakes
Toxicology of Vitamin D

Our second webcast is entitled Preventing Multiple Sclerosis and is the second in a series of web casts regarding nutrition and Multiple Sclerosis. The focus of the Prevention presentation is how MS can be easily, safely and inexpensively prevented by focusing on protective factors. This is a must see for those people with MS who have children.

Our first webcast, Nutritional Strategies for Controlling Multiple Sclerosis, addresses diet and MS. It presents the probable causes of MS and how to effectively control those elements. A review of the protective factors and how to incorporate them into your lifestyle are also covered.
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Postby jimmylegs » Sat Jun 14, 2008 8:33 am

AGREE! plus balance your D3 intake with calcium, magnesium, and zinc. from food (and sun) as much as possible, not neglecting supplements if your bloodwork shows they are needed. i think of the four i just mentioned, D3, calcium, and zinc are useful blood tests. daily intakes of calcium and magnesium, from food and supplements combined, should be 1200mg Ca : 600 mg Mg. you can eat more zinc-rich foods (helps boost your uric acid production, another factor typically low in MS patients) to ensure levels in the middle of the normal range. some zinc supps are in the order of 25mg per day. i had a zinc deficiency (way below normal range) and low uric acid (in "normal range", but spot on or below MS average at the various tests) which i have treated with 100mg supplementary zinc per day. i will get the results this coming business week. then it will be time to look at uric acid again to see if i've managed to escape the dreaded 194 range :) anyway, just chiming in hehe
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