New to MS. What comes next?

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New to MS. What comes next?

Postby aquabat182 » Tue Mar 25, 2014 4:39 pm

Hello,

I'm a 34 year old male currently serving in the United States Coast Guard. I was diagnosed with MS last week, and have since been trying to figure out what comes next. I've only had one flare up (which occured back in January) there was a significant amount of brain fog and fatigue at first so much in fact that It took me about a week to realize I had significant visual field issues and I was experiencing (to a lessor degree) loss of strength and coordination balance and some slurring of speech. Initially it was thoght that I might have been having a stroke but when the MRI was done they showed multiple MRI type lesions in my brain. Since then I have made pretty much a full recovery from all of the symptoms that were plauging me and I hope to stay that way. I'm due to start Copaxone in another week or 2 here (takes a little bit to get up to Alaska) and I'm hopeful that it will help prevent any more flare ups for now.

I just started to read the board today and I've seen a lot of refrences to proper diet and exercise, and I was just curious what most people try to start with? I already exercise on a fairly regular basis, (mostly cardio), and currently I have been on a low fat diet since January (as at first they thought this all could be a cardiac related condition). I've pretty much been sticking with the low fat diet because I've been feeling pretty good on it.

I'm most likely going to be discharged from the CG within the next couple years as I am about to start the medical board process (MS is a service disqualifier). I will be going back to school on my GI bill once I sort out what to study.

I'm hoping to learn a lot from these boards and the people on them as some of you seem to have done a lot of your own research into this disease. I would really welcome any advice people have to give as overall I'm feeling a little overwhelmed by all of the information I'm seeing.

Thanks a lot.

Brian
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Re: New to MS. What comes next?

Postby lyndacarol » Tue Mar 25, 2014 6:09 pm

aquabat182 wrote:I'm a 34 year old male currently serving in the United States Coast Guard. I was diagnosed with MS last week, and have since been trying to figure out what comes next. I've only had one flare up (which occured back in January) there was a significant amount of brain fog and fatigue at first so much in fact that It took me about a week to realize I had significant visual field issues and I was experiencing (to a lessor degree) loss of strength and coordination balance and some slurring of speech. Initially it was thoght that I might have been having a stroke but when the MRI was done they showed multiple MRI type lesions in my brain. Since then I have made pretty much a full recovery from all of the symptoms that were plauging me and I hope to stay that way. I'm due to start Copaxone in another week or 2 here (takes a little bit to get up to Alaska) and I'm hopeful that it will help prevent any more flare ups for now.

I just started to read the board today and I've seen a lot of refrences to proper diet and exercise, and I was just curious what most people try to start with? I already exercise on a fairly regular basis, (mostly cardio), and currently I have been on a low fat diet since January (as at first they thought this all could be a cardiac related condition). I've pretty much been sticking with the low fat diet because I've been feeling pretty good on it.

I'm most likely going to be discharged from the CG within the next couple years as I am about to start the medical board process (MS is a service disqualifier). I will be going back to school on my GI bill once I sort out what to study.

I'm hoping to learn a lot from these boards and the people on them as some of you seem to have done a lot of your own research into this disease. I would really welcome any advice people have to give as overall I'm feeling a little overwhelmed by all of the information I'm seeing.

Thanks a lot.

Brian


Welcome to ThisIsMS, Brian (aquabat182). There is a LOT to read here; we are a diverse group and each of us has our own unique ideas about MS. Mine revolve around gluten sensitivity and excess insulin. Undoubtedly, you will develop your unique ideas, too.

There is growing interest in gluten sensitivity and Dr. Amy Myers, M.D. even explained it on The Dr. Oz Show:
http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.

@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases – – I suspect that this includes MS.

Others have listed the following atypical symptoms (i.e., not the symptoms one would expect with a problem originating in the intestines):

iron deficiency/anemia
dermatitis herpetiformis
chronic fatigue
joint pain
infertility
neurologic symptoms (ataxia, neuropathies)
vitamin deficiencies
ADD
osteoporosis/osteopenia
autoimmune disorders - list available at <http://www.aarda.org/>
migraines

Since the symptoms you mentioned included brain fog, fatigue, etc., I wonder if blood tests were conducted to rule out wheat/gluten sensitivity (It can develop at any time in a person's life.).

Some physicians might want to take only one or two blood tests, but the Celiac Disease Center at Columbia University recommends the following set to maximize the chance of getting accurate results:
Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA
Total IgA level

I do not have a medical background, but it is my opinion that diet can be the most effective treatment and a good place to start (also, your exercise program is vital). I do not support the idea of a low-fat diet since good fats like coconut oil, egg yolks, olive oil, avocados, and even butter are necessary and used by the body in the brain, insulation around the nerves, for making hormones in the body, etc. I think a low-carb diet (avoiding all forms of sugar, artificial sweeteners, wheat products, trans fats, MSG, BPA) is more effective since it lowers the blood sugar level and, more importantly, the resulting insulin levels. Look through the Diet forum for suggestions on other plans.

You may find the forum here entitled "Veterans and MS" also helpful: veterans-and-ms-f51/

We are willing to share our experiences and our opinions, you only have to ask. We are glad you found us; and we thank you for your service in the United States Coast Guard.
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?"
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Re: New to MS. What comes next?

Postby want2bike » Wed Mar 26, 2014 5:44 am

You might want to check out Dr. Bergman's video on autoimmune disease. There are studies showing the MS drugs do not work. If you are going to do Copaxone check out what others have to say about the drug. My thoughts are you get the toxins out of your body and eat the proper foods you get your health back. Check out the diet section and find one that works for you.


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

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

http://www.askapatient.com/viewrating.a ... e=COPAXONE
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Re: New to MS. What comes next?

Postby aquabat182 » Wed Mar 26, 2014 10:29 am

Thanks for the feedback. Looks like I have a lot of reading, and videos to watch. Is there a specific type of exercise I should be focusing on? Or is it more important that I just have a regular routine?
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Re: New to MS. What comes next?

Postby lyndacarol » Wed Mar 26, 2014 11:11 am

aquabat182 wrote:Is there a specific type of exercise I should be focusing on? Or is it more important that I just have a regular routine?

Since I believe that my MS symptoms are the result of excess insulin causing insulin resistance in the smooth and skeletal muscles, it is my opinion that exercise focused on building and maintaining the muscles may be more beneficial than only aerobic (or cardio) exercise (when it comes to reversing insulin resistance).

However, as we all know, just getting the blood moving is important for good general health and good heart health. So… depending on your situation and physical constraints on exercise, I encourage a regular routine, whatever you are able to do. We have much more knowledgeable people here at ThisIsMS (even real bodybuilders!) who will jump in here, I hope, with their suggestions.
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?"
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Re: New to MS. What comes next?

Postby Kronk » Wed Mar 26, 2014 12:50 pm

want2bike wrote: There are studies showing the MS drugs do not work.


This is an inaccurate statement, all MS Drugs all work to reduce relpases but none claim to reduce disability or the time it takes to transition to primary progressive MS. That being said there is research that shows Copaxone and Tecifidera may delay progressive MS.

http://www.medicalnewstoday.com/releases/180599.php

http://www.drugs.com/clinical_trials/po ... d-223.html

lyndacarole wrote: it is my opinion that exercise focused on building and maintaining the muscles may be more beneficial than only aerobic


I very much agree with Lyndacarole. Several decades ago a British neurologist came up with a weight training program for MS called "REPS". He said doing low rep high weight with rest between sets was neuroprotective and allieviated many of the symptoms MS patients were suffering. Other studies have shown a clear link between resistance exercise and better disease outcomes. I follow the Stronglifts 5x5 routine which is basically power lifting 4 days a week. I believe it helps with MS but it definately helps in other areas of life. I have put on 16lbs of muscle in 6 months and Squat 2x my bodyweight.

http://www.ncbi.nlm.nih.gov/pubmed/15584492

http://stronglifts.com/stronglifts-5x5- ... g-program/

In regards to diet I would follow Swank or OMS. No other fad diets right now have the clinical results that a diet with a reduction of saturated fat shows.

The biggest thing right now is to STAY POSITIVE. I know it's tough when first diagnosed but it is very important. I know healthy individuals diagnosed more than 15 years ago. MS is nothing to them. Another interesting point is that Alaska has one of the lowest MS rates in North America especially for native Alaskans. I myself was Dx 2 years ago 1 month after the birth of my second son and hit hard in my first year with at least 5 clear relapses. Since starting Swank, Exercise, Copaxone, LDN and supplements I have been relapse free for the past year.

You will have to sort through a lot of BS and conspiracy theories in your search for MS information. View everythign with a skeptical eye. Best of Luck!
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Re: New to MS. What comes next?

Postby jimmylegs » Thu Mar 27, 2014 7:04 am

just to add to that, and with the disclaimer that i don't really know much in terms of specifics concerning any ms diets, i would personally caution anyone going on a fat reduction diet to
1) take care to have plenty of healthy fats
2) recognize that not all polyunsaturated fats are created equal - watch your omega 6 to omega 3 ratio
3) keep in some saturated fat - no demonizing by going for zero grams, when the guidelines say things like 'no more than 15'.

researchers are finding (in relation to heart disease in particular) that it's omega 6 fats clogging arteries, not sat fat. and that in spite of early thinking on the matter and a few decades of scientists trying to conclusively link sat fat consumption and heart disease, that they just can't do it.

i think i recall reading (here at TiMS) some years ago now, that the actual food product category used to make the early links between sat fat consumption and incidence of disease actually included the entire baked goods category. so never mind the processing piece, or the flour piece, it was just the fat in processed baked goods that was the problem. so there's that kind of nuance to consider. i'll have a look for that older post and its source, but if anyone else can put their hands on it sooner that would be useful info for patients starting in on decision-making pertaining to diet.

in the meantime:
The importance of the ratio of omega-6/omega-3 essential fatty acids.
http://www.ncbi.nlm.nih.gov/pubmed/12442909
Several sources of information suggest that human beings evolved on a diet with a ratio of omega-6 to omega-3 essential fatty acids (EFA) of approximately 1 whereas in Western diets the ratio is 15/1-16.7/1. Western diets are deficient in omega-3 fatty acids, and have excessive amounts of omega-6 fatty acids compared with the diet on which human beings evolved and their genetic patterns were established. Excessive amounts of omega-6 polyunsaturated fatty acids (PUFA) and a very high omega-6/omega-3 ratio, as is found in today's Western diets, promote the pathogenesis of many diseases, including cardiovascular disease, cancer, and inflammatory and autoimmune diseases, whereas increased levels of omega-3 PUFA (a low omega-6/omega-3 ratio) exert suppressive effects. In the secondary prevention of cardiovascular disease, a ratio of 4/1 was associated with a 70% decrease in total mortality. A ratio of 2.5/1 reduced rectal cell proliferation in patients with colorectal cancer, whereas a ratio of 4/1 with the same amount of omega-3 PUFA had no effect. The lower omega-6/omega-3 ratio in women with breast cancer was associated with decreased risk. A ratio of 2-3/1 suppressed inflammation in patients with rheumatoid arthritis, and a ratio of 5/1 had a beneficial effect on patients with asthma, whereas a ratio of 10/1 had adverse consequences. These studies indicate that the optimal ratio may vary with the disease under consideration. This is consistent with the fact that chronic diseases are multigenic and multifactorial. Therefore, it is quite possible that the therapeutic dose of omega-3 fatty acids will depend on the degree of severity of disease resulting from the genetic predisposition. A lower ratio of omega-6/omega-3 fatty acids is more desirable in reducing the risk of many of the chronic diseases of high prevalence in Western societies, as well as in the developing countries, that are being exported to the rest of the world.
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Re: New to MS. What comes next?

Postby aquabat182 » Thu Mar 27, 2014 11:35 am

Thank you so much for all of the input. After posting this yesterday I went on to read a lot more on the forums as well. I've always been physically active so I think I can probably make some transitions into the areas I need to. Its definitely nice how much info you have all put right in front of me here.

I need to adjust my diet more, but not as much as I thought. When I said low fat, I should have specified that I was cutting out trans-fats etc, and moving to a healthier level relying on good fats. I've pretty much cut trans-fats completely lowered saturated fats and have tried to stick to the about 30% of your daily calories being from fat rule. The diet will be the biggest adjustment but there is certainly enough motivation to make this type of change.

I just want to say again thank you for all of this input. I am not nearly as bad off as a number of other people I have read about on this forum, and I'm hoping if I take the right steps now I can stay healthy for as long as possible.

Thanks again,

Brian
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