Tecfidera & Me – The Beginning

Wednesday of last week, I received my shipment of this month’s Tecfidera. I decided to start it that night.

So far, it hasn’t been bad.  I take my pills with food (breakfast and dinner), and I’m already on Prilosec, so I haven’t had any stomach issues.  I have, however, experienced flushing a few times, and it feels more funny/unusual than upsetting. It’s kind of weird to have really hot ears out of nowhere.

I’m still not used to going to sleep without giving myself an injection.  Every night, I climb into bed and feel like I’m forgetting something important. I’m sure I’d get more used to it if I would just throw away the 5 sharps containers I have sitting on the nightstand next to me.

One thing that has already changed in my life, thanks to this drug, is that I am consistently eating breakfast. It still feels weird every day to eat prior to getting on my computer. I don’t know when in my life I actually stopped eating breakfast, but I’m pretty sure it was somewhere around 1994, when I had study hall 1st period during my freshman year of high school, and breakfast was a pack of peanut M&Ms and a Dr. Pepper from the school’s vending machines. (Hey, I was in band, marching with a 30 pound bass drum 6 days a week. My metabolism could somehow handle it then.)

The Wonderful World of Weight-Loss

Unfortunately, my metabolism is nowhere near as good as it was when I was 14. I currently am tracking my calories on MyFitnessPal and am following their suggestion of keeping my caloric intake below 1600 a day. I’m also working out pretty hardcore: doing weightlifting & 20 minutes of cardio 3 times a week and doing 30 minutes of cardio or more on the off days. You would think, after a month of that sort of activity, that I would have seen some movement from the scale.  I mean, I have been working out at least 3 times a week for 3 months now.  But the scale sits at 214 and will not budge for anything.

That’s not to say that I haven’t seen improvement. When I started working out, I was doing most of my weight-lifting exercises on the very lowest weight setting (usually 15 pounds) – and I’m lifting much, much more weight than when I was starting. I also couldn’t do a full 10 minutes on the elliptical trainer on level 1 without having to stop because of fatigue, and now I can rock out 20 minutes on level 10 without thinking about it. As far as measurements go, I’ve lost an inch from my arms, an inch from my waist, 2 inches from my hips, and 2 from my thighs. So, I am seeing improvement… just not on the scale. My relationship with gravity has not changed. And for whatever ridiculous and infuriating reason, that number, staring me in the face, drives me mad. It feels like the scale itself is saying to me, “You’re not trying hard enough. Do something different.”

Diets and MS

Of course, the first thing that comes to mind when thinking about weight loss is changing your diet. I’m already limiting my caloric intake to the amount that science says ought to make a difference. I started thinking maybe I needed to change what foods I am eating. I already limit my sugar and fat intake to 30g and 50g respectively per day. I already cut out processed foods.

Then, I read this article that talks about yet another doctor (Dr. Jelinek)  who has come up with a diet that he proclaims “cures” MS.  It just makes me shake my head and realize that a big part of why I am so frustrated with this situation is that I have tried so many different diets all throughout my life, with none of them making a real, lasting difference in my life.

I started with Weight Watchers when I was 8. That went nowhere. As a teenager, I tried Atkins. I actually almost passed out on the first day because my diet at the time was comprised primarily of bread and I had “nothing to eat.” After the first week, I decided it wasn’t worth it.

Once I got diagnosed with MS, I tried the Swank diet for several months with zero results. I asked my neurologist at that time what she suggested, and she said to eat a low-fat, high-fiber diet as suggested by USDA. Time passed, and I ended up with a seizure disorder. My epileptologist suggested that I try the ketogenic diet to help stop the seizures. But, since my seizures were caused by MS, that didn’t help either, so I went back to a traditional western diet.

Then, in 2010, I tried the paleo diet, in earnest – for several months. I had more energy, less pain from inflammation, and I lost weight without exercising… but it was expensive, took forever to make meals, and family was not supportive of it at all. Every week, when we’d visit Adam’s parents, there was some other reason that one of his family members would say we should quit the diet. We were presented with homemade cookies, bread, or sugar-added fruits or veggies that had been lovingly prepared that we were faced with, and it gets really hard, emotionally, to continually be telling your in-laws, “I don’t want to eat what you’re offering me.”  So, I caved in and went back to eating “like a normal person.”

Dr. Wahls shortly thereafter came forward with science that says eating a paleo diet, including the following “recipe” for daily vegetable intake can vastly improve your MS:  3 cups of cruciferous and dark greens, 3 cups intensely coloured: 1 cup red vegetables / fruit, 1 cup blue black vegetables / fruits, 1 cup yellow/orange vegetable / fruits, and 3 cups others including: 1 cup mushrooms / onion family (for organic sulphur), and seaweed for iodine and trace minerals. (source)

Many of my Facebook friends gave her formula a try, and while it hasn’t hurt any of them, I have yet to hear about any significant improvements.

Now, Dr. Jelinek says that we should be eating only eating only vegetables, fruits, nuts, legumes, seeds, pulses and grains (so most pastas, rice, wheat, oats, corn, barley, etc), fish and all other seafood, & egg whites. This means those of us with MS should avoid:

• Meat, including processed meat, salami, sausages, canned meat
• Eggs except for egg whites
• Dairy products; that is, avoid milk, cream, butter, ice cream and cheeses. Low fat milk or yogurt is not acceptable. Cow’s milk and dairy products are best avoided altogether as the protein is likely to be as much of a problem as the saturated fat, given recent evidence. Soy products or rice or oat milk are good substitutes.
• Any biscuits, pastries, cakes, muffins, doughnuts or shortening, unless fat-free
• Snacks like chips, corn chips, party foods
• Margarine, shortening, lard, chocolate, coconut and palm oil.
• Fried and deep fried foods except those fried without oil or with just a dash of olive oil. It is important not to heat oils if possible.
• Most fast foods (burgers, fried chicken, etc.)
• Other fats and oils

Then there’s the MS Recovery Diet. It’s based on the idea that there are five common trigger foods that can set off the symptoms of MS–dairy, grains containing gluten, legumes, eggs and yeast.  This would seem to be mostly in line with both Dr. Wahls’ advice and the paleo diet.

Lastly, there’s the MS Diet for Women which was designed by an MS sufferer who has, as I have, gone through all the science on diets and MS and decided to smash them all together for the best result.  This diet has you avoid dairy/cow’s milk products, gluten and wheat, saturated fats (meaning red meat), heated fats (in any form), caffeine, refined foods (with high sugar levels), legumes, chicken and eggs, and citrus fruit. What are you allowed to eat?  Fruit (but not citrus!), all vegetables, non-glutenous grains, oily fish, nuts and seeds. That’s it. It’s like the paleo diet on crack.

It’s no wonder, when confronted with this many contradictory diets, that I am stymied as to the correct plan of action. This, of course, keeps me from doing anything but limiting calorie, fat, and sugar intake, which is exactly what both of my current neurologists say is all I should be doing.

I’ll let you know if anything changes.