Monday, July 6, 2015

Magazine Monday: On Diet

a past CSA share from my awesome CSA farm
Diet and its potential role in causing/treating MS is a controversial topic, and one that tends to make me somewhat angry. Why? The various diets are generally presented as amazing miracle cures, yet there are always plenty of people who try the diet and it does nothing for them. Also, the core aspects of many of the popular diets are EXACTLY HOW I'VE ALWAYS EATEN! Yet, along came MS anyway. Perhaps if I ate a typical American crappy diet full of processed foods and lots of meat my MS would be much worse? Or maybe diet doesn't have the HUGE role in MS that some of the devotees of various diets would have us believe. Don't get me wrong - I certainly believe diet plays a significant role in our overall health and well being, I just question how much of an impact it can have on MS in particular.

The Fall 2014 issue of MS Focus featured interviews with 2 of the popular MS diet leaders. The Wahls Protocol, led by Dr. Terry Wahls comes with a pretty remarkable story. Dr. Wahls gave a TEDs talk about how her extensive research and then overhaul of her diet took her from having to use a zero-gravity chair and dealing with severe fatigue and brain fog and being considered secondary-progressive to pretty much regaining all of her abilities. Her diet is based on the Paleo diet, but goes beyond it by adding and carefully tracking 36 vitamins, minerals, fats, and antioxidants. The diet consists largely of leafy greens, sulfurous veggies, deeply pigmented foods, grass-fed meat, wild fish, and seaweed. The fact that she is a doctor and did so much extensive research and continues to test her diet extensively gives this diet more credence. However, I'm skeptical about its powers. That she could go from point A to point B just from eating this way (though she also did other things, like neuromuscular electrical stimulation) seems pretty unbelievable. Not that it happened for her, exactly, but just the idea that the diet would produce this same kind of effect in others. I'll continue to follow this, and I am curious to read her book, but I need some convincing to jump on this bandwagon. I've got the veggie side more than covered, but I eat almost no meat and I'm also not a fan of most fish and seaweed. I also eat whole grains, which aren't a part of her plan. I'd be willing to give this diet a try, if I am convinced by the book and/or further research.

The second diet discussed is Dr. John McDougall's diet. I'm pretty sure that he is not an MS patient himself. This diet is in many ways the opposite of the Wahls Protocol, in that starches (beans, corn, sweet potatoes, rice) are hugely important. The diet is generally vegetarian, and also involves eating plenty of veggies and some fruits. He's also done plenty of research and has led over 10,000 patients in it. His studies show significant positive impact on reduction of fatigue, in particular. There is no evidence to support the idea that this diet reduces disability or shows changes on MRI. This is the interview that really pissed me off, because this diet is pretty much exactly how I eat and have eaten since before I got MS. McDougall goes so far as to basically suggest that eating poorly causes MS, calling it a disease of food poisoning! I can't even begin to tell you how upset this statement makes me!! This diet is great, and good for your overall health, yes. That this diet causes and can treat and "reverse" MS is total BS.

P.S. Posts 2 days in a row? Woah, will this trend continue?! Time will tell.

Sunday, July 5, 2015

On Shingles

I don't think I've written all that much about my course of DMD treatments. Here's a quick run down. I was on Copaxone for about 6 months, then Tysabri for about 6 years, and I've just recently tried Gilenya.

Gilenya was great for awhile. My heart rate took about a month to normalize, but otherwise things were good. Taking a pill once a day was easy and there weren't really any side effects.

But then, 2 months in, shingles happened. Shingles! SHINGLES! AKA, the worst thing ever. Two entirely miserable weeks. About 3 days of EXCRUCIATING pain, exacerbated by things like moving and breathing. The rest was just varying levels of bad pain and some pretty extreme itching towards the end. I say the end, but it's been about a month now and I still have a few scabs left and pink scars that will hopefully eventually go away. I also occasionally still feel little sharp jabs of pain in the rash area, but nothing like it was before.

I'd love to share some pictures of my awesome rash, but I don't want to scar you. From extensive googling of it myself, I know that looking at other people's rashes can be horrifying and disgusting. However, I really enjoyed examining my own collection of blisters. I took lots of pictures, and they are awesome. But probably only to me!  I mean, they're awful, and they remind me of how awful it was, but still they are somehow awesome to look at. Since I'm kind, I'll just use this picture instead. When my niece heard that I had shingles, she said "You mean like those things on the roof of the house?" Yup.

credit: Randen Pederson
Because the Gilenya caused the shingles and because I really really really don't want to get shingles again, I'm currently on the market for a new DMD. I'm considering returning to Tysabri (which was like a miracle for me taking me from like 10 relapses a year to zero and which I was very happy with but ultimately the PML risk - even though so far I've been JC negative - is mighty scary especially with having already done it for 6 years) but am leaning towards Aubagio. Doc wants decision by tomorrow. Concerned about GI side effects and hair loss, as well as possible risks, but we'll see how it goes!