This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello all. My story started in 2004 with some numbness and tingling in my legs. MRIs at the time showed nothing. Nothing until 2008 when had an episode of vertigo which proved to be caused by nystagmus. Was diagnosed as probable for MS at the time but no lesions seen. Nothing again until 2012 when I was having tingling in my right arm and this time the MRI found some lesions in my neck and this time one was seen in my brain. I have been using Swank and gluten free since 2008 as I identified I am allergic to wheat. I take 4,000 IUs of Vit D daily and 3,000 IUs of fish oils daily. I now have some Uthoffs Phenomen as diagnosed by my Optical Neurologist.

Every time I have had a flare up it seems to be directly related to some stress in my life. Last 6 months I have not been getting nearly enough sleep (5-6 hrs a night with some napping) and have been stressed at work for and I think this is directly related to my current condition. My neuro wants me start on Copaxone but after reading the experiences of some other users I am scared of this and really all other treatments offered by the drugs.

I am targeting my question for the natural solutions people. What else can I do apart from the Vitamin D and fish oils and getting more sleep? I have 2 young children and am a 36 year old male.

Thank you in advance.

Hi, mccpm.

Just read your post and thought I might respond. Not sure I can offer you new information in response to your specific question, although I certainly relate and understand your desire to explore "natural" alternatives. However, I thought that by simply sharing my own story, you might gain some insights.

I had my first (sensory only) symptoms in 1985. I was 28. Tingling, buzzing, vibrating sensation that spread from my toes up through my legs. In those days, they didn't have MRIs, but I did have a rather unpleasant spinal tap in the emergency room of Dartmouth Hitchcock Hospital in Hanover, NH. The neurologist told me then I "might" at some point in the future develop MS but it took another 5 years before I experienced similar symptoms and this time, in 1990, I was definitively diagnosed at Yale. (I had moved down to CT by this time.)

So I've lived with MS for 28 years. Because my case always seems relatively mild, meaning I experienced only sensory symptoms and some difficulty walking during a few relapses due to the severity of the buzzing sensation in my feet, my doctors never insisted I go on a drug. That began to change as more research came out showing the disease is still active and doing its evil even when you are symptom-free. So at their insistence, I finally went on a drug (Copaxone) in 2000.

Now I haven't been to this forum in years; i just stumbled across it as I was researching BG12. So I don't know what negative stuff you've read here about Copaxone,and frankly, I'm quite surprised becus of all the drugs available now, Copaxone has the safest profile with the fewest number of side effects!

No, I don't enjoy the needles, but aside from injection site issues like small lumps forming on areas of my skin where i've injected too many times (the skin seems to toughen up over time), i've NEVER experienced any side effects from Copaxone, and having stuck myself daily for the past 13 years i would guess I'm one of the longer-term patients on it.

I really think you should reconsider not going on a pharmaceutical drug; MS is not something to mess around with. My personal choice, as you can see, is Copaxone, but even if you went on one of the other drugs, I think you'd be better off.

Believe me, I understand the reluctance to do needles and the desire to avoid drugs. I come from a very health-conscious and nutrition-oriented family. My mother was experimenting with tofu and homemade yogurt, carob cookies, etc, back in the 70s, long before the whole whole foods movement began. It's just that by delaying treatment, you're playing a big game of Russian roulette with your health and you may be allowing irreversible damage to be done in the process.

This, I think, is my conundrum. Becus my MS was always mild, I CAN'T say for sure that it's the Copaxone that's allowed me to live a full and mostly complication-free life these past 28 years. My average rate of relapse was about every 4 or 5 years before i was on the Copaxone, and the last time i had a relapse now, on the Copaxone, was in 2006 (7 years ago)

If you are fully committed to avoiding the drugs, then you can just disregard everything I've said here. Everyone's gotta make their own decision. But your case struck a chord with me becus in my own family I am dealing with 2 people who have taken their distrust of the medical establishment to an extreme degree. My sister, for instance, suffered with a deteriorating hip bone for years before she finally buckled and had hip replacement surgery. It seemed ridiculous to me that she would suffer so much pain and misery FOR YEARS because she doesn't trust doctors. Hey, I agree there are some bad drugs out there and some bad medicine, but don't throw the baby out with the bathwater. It's like she rejects a century's worth of progress and breakthroughs in the field of medicine.

My mother, on the other hand, is close to 80 and suffers from debilitating osteoarthritis. She's in a lot of pain frequently when she has flare-ups, but refuses to take the medication the doctor prescribes becus she reads the warning labels and gets petrified by all the risk factors. Even if there's a one in a million chance she'll experience one of those side effects, she won't take the meds.

I might also add that your initial outlook looks good, and fairly similar to mine as far as frequency of relapse and symptoms. I'm familiar with the Swank diet and have his book; it's a great diet, even for someone without MS and it certainly can't hurt. I would say live your life as fully as you can and don't let MS stop you from doing anything if you can help it. From a natural perspective, I'm not sure there's a whole lot more you can do, but I do think the Vit. D is very important, as is the fish oil. And exercise.

I also noticed that several times over the course of years that extreme and prolonged stress seemed to trigger a relapse. Not short-term stress, but longer term and extreme. So do whatever you can to avoid those kinds of situations. It's not always possible. I was going through relationship problems both times it happened to me.

Thanks so much for the feedback. I guess that overall it is probably somewhat of a pride issue. You want to be able to say that you can have control over things. My mind is very linear, if I do X then Y happens. If I sleep 5 hours a night or less and am stressed out then I will get MS symptoms or probably something else because I know that type of living doesn't work for me in the medium to long term. But my thinking is more along the lines of should I take medicine that will give me a better chance when I am living what I would describe as recklessly especially given my condition? Or should I just focus more on getting sleep and not stressing out and maybe that will give me a better chance versus drugs that from what I can tell are never surefire guarantees of health? I definitely see and understand your point about the disease having potential to progress without any obvious symptoms and I really appreciate you reminding me of this because it is an excellent point. We may "feel better" but there are silent and hidden things going on that can still cause damage and you don't want to delude yourself into believing that just because you feel ok you aren't progressing with it. The joys of living with a disease with so many unknowns, I guess and everyone seems to have their own opinions.

Back to Copaxone specifically, my stomach starts to turn when I think about it or read anything about the actual application because I really don't like needles. I am the kind of guy who passes out after a small blood test (my wife always laughs at me for this!). I run and exercise a lot so I don't have a lot of excess skin etc to inject into so that also makes me nervous especially reading some people's stories about lipoatrophy.

I do appreciate your long term usage and experience with this drug and that is the reason why I chose it among the others that my neurologist discussed with me: track record and what she described as the little or no side effects. I think that is one of the things that bothered me, she said there were little to no side effects and then I started reading people's stories about what I would describe as side effects or issues. But of course it's the internet and you can't take one or ten or 20 people's anecdotes and make that your own little "scientific study" I guess.

Have you ever used the every other day regimen with Copaxone or do you use it every day? Was wondering if EOD might be a better way to ease into it.

well i just wrote a detailed response and lost it somehow. i seem to be losing a lot of posts lately.

i'm not interested in writing it in detail again, but what i wrote (besides hi and welcome) addressed your potential nutritional links to nystagmus, stress, optic neuritis, gluten free diet, wheat sensitivity, interactions with vit d3 and other supplements, etc etc etc

the short story is, look at zinc and magnesium in your diet, consider boosting food sources, access testing if you can, consider supplements if needed. (and you do need to supplement magnesium for sure if you are high dosing d3 daily)

zinc food info
http://www.whfoods.com/genpage.php?tnam ... t&dbid=115

magnesium food info
http://www.whfoods.com/genpage.php?tnam ... nt&dbid=75

the long story on ms and nutrition
regimens-f22/topic2489.html#p154

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

The experience of Roger MacDougall with the paleo diet is remarkable. Drugs are not the answer. Here is a link to what people have experienced with Copaxone. Dr. Bergman can explain his treatment of MS.

http://www.direct-ms.org/rogermcdougall.html

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.askapatient.com/viewrating.a ... PerPage=60

http://www.youtube.com/watch?v=zGmyUppmt-g

If you consider that stress causes a blood reflux which injures the Central Nervous System, think about stopping the reflux and you can control the disease. I have found a simple neck massage forcing the blood down towards the heart is enough to stop an attack for me. Every morning I give myself a simple TENS acupressure treatment to get the blood flowing. Diet serves to relieve stress caused by food intolerances and toxins. The flu tenses up the muscles which can compress the veins leading from the brain-spinal cord, but now I can control that by insisting on a good upper back neck massage.. Looking over my notes and medical records of 30 years ago, I now realize I inadvertently saved my legs by getting a Shiatsu massage, though at the time I thought it aggravated my condition beause of the sauna heat. Read at least my main paper on the site MS Cure Enigmas.net so I don't have to repeat myself here. Believe me, you are in the early stages, it doesn't sound like you have an acute case, you can get this under control by yourself and with the assistance of your wife and friends for frequent upper back/neck massages, holistic doctors and body workers. If I had known about the CCSVI blood reflux theory 20 years ago I wouldn't need a cane to walk today.
MS Cure Enigmas.net

Here is my own opinion: I believe insulin is a major player. I believe that excess insulin is responsible for most of my MS symptoms and possibly yours. From this day forward, I encourage you to eat a healthy diet (a good idea whether or not a person has MS) – a diet that will not trigger insulin production. Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- remove ALL trans fats (These increase insulin.); remove all sugar (including beer, wine, etc. which have sugar); and remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.); and remove white flour, white bread (your wheat allergy has already helped with these two), white potatoes, white rice (in fact, all carbs so far as possible) from your diet.

Ordinarily, I suggest that people undergo a blood draw and "fasting blood insulin test," which may not be possible in your case (we don't want you to pass out!)

By the way, stress in your life (and a sleep habit of 5-6 hours a night) increases the hormone cortisol. Cortisol (and corticosteroids, like prednisone and Solu-Medrol) raise the blood sugar… and, consequently, the insulin level.

After personally using DMD's (Betaseron, Avonex, Copaxone) for more than 10 years and judging them to be ineffective, I do not believe that any currently approved MS drugs will be effective until scientists identify the CAUSE of MS.

My suspicion is that Fatty Liver Disease also contributes to MS, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

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My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"

fyi zinc ties in with what lc is saying about fatty liver and correlations with increased insulin.

backing up the fatty liver disease - insulin connection, if not causality wrt ms per se:

Role of nonalcoholic fatty liver disease in the development of insulin resistance and diabetes
http://www.expert-reviews.com/doi/abs/1 ... 24.2.5.705
"Nonalcoholic fatty liver disease (NAFLD) is a common disease that is usually accompanied by insulin resistance (IR). Whether or how NAFLD and IR are temporally and mechanistically related is controversial. Recent studies focus on their epidemiology, the importance of dietary fat, the role of adipocytokines and the sterol regulatory element-binding protein-1c. NAFLD and IR may progress to severe diseases, such as cirrhosis, diabetes or both, and understanding the pathogenesis of the precursor conditions has preventive and therapeutic implications. This review focuses on the possible relationships between NAFLD and IR and the treatment options available."

moving on to the zinc connection:

Clinical studies on zinc in chronic liver diseases.
http://www.ncbi.nlm.nih.gov/pubmed/3218283
"Zinc is essential to numerous metabolic processes in the organism, multiform symptoms being found especially in deficiencies. In addition to nutritional factors, diseases such as cirrhosis of the liver, Crohn's disease and chronic renal diseases are relevant in this context. In the present work, serum zinc levels were investigated in 109 patients with various chronic liver diseases. The lowest serum zinc concentrations were seen in patients with decompensated hepatic cirrhosis with coma. Patients with decompensated alcoholic cirrhosis had lower zinc levels as subjects with nonalcoholic cirrhosis. None of the groups exhibited a significant change in serum zinc levels during the treatment period. Laboratory data (such as transaminases, thromboplastin time, alkaline phosphatase, total proteins) did not correlate with the serum zinc concentrations. The concentration of plasma ammonia, however, appeared to be inversely related to the serum zinc levels. Thus, patients with coma had maximum ammonia and minimum zinc levels."

the ammonia part is scary. it means the urea cycle is broken and you would also see the low uric acid common to ms patients, in addition to the low zinc and high ammonia.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

mccpm –Based on the following, I think I must amend my diet suggestion – it is best to remove ALL grains, including whole-grain.

From the Mercola newsletter, "10 Lies and Misconceptions Spread By Mainstream Nutrition," dated February 25, 2013:

http://articles.mercola.com/sites/artic ... n=20130225

"Unfortunately ALL grains, including whole-grain and organic varieties, can elevate your insulin levels, which can increase your risk of disease. They also contain gluten, which many are sensitive to, if not outright allergic. It has been my experience that more than 85 percent of Americans have trouble controlling their insulin levels...."

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My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"

I don't agree suggesting one should eliminate ALL grains from the diet. Glutens are generally suspect because of food intolerances (even tennis champions like Nadal and Djokovik sp? are on gluten free diets.) I can eat rice, corn, buckwheat maybe some others. Not all MS people have diabetes, I don't. Actually, those who use aspartame to control sugar intake are really poisoning themselves, aspartame is a neurotoxin. (Not saying anyone suggests using that, just a reminder.) Obviously if one has diabetes MS that requires careful thought for treatment.

MS Cure Enigmas.net

i zipped quickly through the 10 lies list and by and large i agree with the general ideas in the various points. to a degree, i can see where it's coming from with the grains item. but i too disagree re removing all grains from diet.

i don't have a problem with gluten free grains, and i don't have a problem with gluten grains either, as long as they're eaten in moderation and properly balanced with other foods. i used to react to wheat but no longer. i did have a reaction to them, but rather than avoid, i looked for the reason WHY they were giving me issues, and eventually fixed the underlying issues so that i can enjoy gluten grains in moderation now.

all those listed health conditions have links to nutrient depletion and the nutrients in question can be depleted from gluten consumption. this is only a problem if you fail to eat the right mix of nutrient dense foods to compensate for and balance gluten intake.

i think advice to eliminate or reduce definitely depends on the individual and am more in line with how the article puts it than making a blanket statement to eleminate all grains period.

would have been nice to sese an item about red meat. it takes adequate zinc (often found in red meat) to deal with gluten intake. societally, zinc levels are on the decline.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Jimmy:

Thanks for the zinc / magnesium advice. I read the first page of your regimen page. It seems like I need to have a nutrition blood levels test done, correct? What is the proper test I should ask for? I purchased some zinc and magnesium supplements. Would you recommend those or should I go with diet on it? I read somewhere that Vit D3 is better absorbed through supplements vs dietary. Is the same true with Zinc and Magnesium?

Lyndacarol: Interesting you mention insulin. My uncle had Diabetes and Parkinsons disease also. My maternal grandfather had Lupus and I have a cousin who now has an undiagnosed immune system condition. Apart from diet anything else to focus on with that?

Vesta:
I have been experiencing some mild "electric shock" sensations on occasion. Not sure if this is a new thing but interesting your focus on the neck and that is where the first lesions on my MRI was sighted. Also I take a nap on the train each day on the way to work since I started a new job 2 years ago and I have noticed much more tightness in my neck. In fact my 2012 summer episode I believed at first was nothing but sleeping improperly on the train. Your description on the MSCureenigmas desribes my background growing up to a T. Low sunlight, high stress, cold weather. Can you send me a link on the recommended techniques for neck massage? Also is a CCSVI test a standard medical procedure?

Question for everyone? What is the view on Turmeric Extract. I purchased some today. I am still experiencing the Ulthoff's/Pulrich's effects so if anyone has any advice that targets those symptoms I would appreciate it.

Thank you all for all of your help and insight!!

Lot of studies showing the benefits of Tumeric. Many with MS use it.

http://www.livestrong.com/article/48110 ... sclerosis/

http://www.drweil.com/drw/u/id/QAA288736

http://www.youtube.com/watch?v=GIQ_9lnNlyc

mccpm – I see my goal as reducing the insulin level. At this time, medicine has no drug or treatment other than a diet that can reduce the insulin level.

Metformin is used in type II diabetes to improve the effectiveness of insulin on glucose removal from the bloodstream. This may indirectly improve the amount of insulin secreted by the pancreas, since in a properly functioning Blood Sugar Control System the pancreas will produce an amount of insulin in response to the amount of glucose (although actually the pancreas always overcompensates for the amount of glucose and produces an amount of insulin in an excess to the amount of glucose).

Diet has not been adequate to reduce my insulin level – I eat NO sugar, in any form, NO sugar alcohols; I eat NO trans fats, NO MSG; I eat NO refined carbohydrates, NO complex carbs… I subsist on green tea, fresh fruit and vegetables, chicken, and fish. With this diet, my insulin test results are still 9 UU/ML or higher. Obviously, my pancreas pumps out excess insulin for a reason I have not yet determined.

(I will not use any glucocorticosteroid drugs either, as these will raise the glucose level also.)

My focus has turned to trying to remove insulin already produced. The natural process for insulin should be 1) secretion or synthesis of the hormone, 2) "working career" of managing glucose, by ferrying it into the cells for energy or fat storage, and 3) degradation. There is a specific Insulin-Degrading Enzyme, an atypical zinc-metalloprotease, whose secondary mission is to degrade amyloid beta (the accumulation of which now is implicated in the cause of Alzheimer's). I feel that if I could enhance the synthesis of IDE my insulin level would go down, but I have not yet found the way to increase my IDE.

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My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"