What is MS?

What is MS?

This may be a hard one to follow... I'm having difficulty trying to explain my thoughts on this one... 

I was thinking about this today. Before I was diagnosed with MS, did I have MS? My friends don't have MS but, then again, neither did I until I lost feeling in my body and had an MRI to show that I had more than one lesion on my brain which literally translates to "Multiple Sclerosis."

Is the disease "MS" simply characterized as the visible evidence of my Immune System fighting my Nervous System? The name would imply yes, that in order to have MS, you have to show that evidence. What if there were a way to see that someones immune system were tuned to attack the myelin coating of their nerves before it ever caused the scarring and damage associated with MS? Would that person still be diagnosed with the disease or, as the name "Multiple Sclerosis" indicates, do we need to wait until the damage is done before a diagnosis can be placed?

The name of the disease is simply the aftermath of its destruction and has nothing to do with the problem. It would be like, instead of calling a war a war, we called it "Fallen Buildings" because that is what we see after it's run its course.

I'm sure my immune system was messed up long before I had any evidence of demyelination in my brain or spine. Did I have MS then even though I didn't physically have Multiple Sclerosis that a doctor could see? Right now, my systems are not attacking each other. This goes on for months - even years. It was probably in remission before it ever got active. There would be no evidence of it on any diagnostic imaging, but it was there: the defect in my body which gives my immune cells the wrong information.

So what is MS?

Is it someone's body's tendency to attack their own nervous system? Or is it the actual damage that has been caused by this tendency?

I hope this argument is being made by people much smarter than me.

NickWithMS

Feelin like $#!%

I mentioned in my previous blog about going gluten free. CassyWithoutMS and I have decided to cut gluten out of our diet as much as we can. Now, this is easier for us than it is for people with an actual food allergy because when you're making a dietary choice for health reasons instead of to avoid something like anaphylaxis, one doesn't have to worry about cross contamination in processing.

I started reading the book "Wheat Belly" which has basically taught me this: Over the past 50 or so years - through no malice or bad intentions - humans have macro-evolved the wheat plant so that it can yield more food and grow in harsher climates. We did this in an attempt to end world hunger and keep food costs down. (who wouldn't, given the power, right?) The process is not much different than planting a bunch of different vegetables in your garden, and then replanting the seeds from the ones which grow the best. Repeat this process hundreds of times and presto! You have genetically engineered vegetables specifically to grow in your garden. Scientists helped the process by introducing pollen from different types of grass which grow in the desired climates to make the results happen more rapidly. What they didn't anticipate was that, in the process, they altered the genetic structure of the Gluten protein. A protein that remained vastly unchanged for tens of thousands of years. A protein that evolution has molded our bodies to accepting and digesting efficiently. Unfortunately for us, humans haven't evolved quite as quickly and our digestive system never adapted to the change in wheat. The result: we can't digest gluten correctly and, more importantly, foods which contain gluten (which, as it turns out, is almost everything).

Our bodies have found their own ways of working through the problem, mostly that an increased dose of insulin will help store the new food as fat which we can then digest more easily at a later time. Right, because that always works out well. "Yeah, I'll digest that fat later on the treadmill..." Our bodies' little trick has lead to increased waistlines nationwide. Look at photos from 75 years ago... how many people were severely overweight? It certainly wasn't the 'norm' like it is now. These strategies work in helping us get through the digestive process and we have been fat and happy ever since.

I decided, after learning this, that I wanted to cut the wheat out of my diet and replace them with oats, rice, and other carbohydrates which can be more easily digested... though, I've found it easier to cut most of the carbs out rather than replace them. I've been eating a lot of salads... I love salads...

This caused another problem. Have you ever gone to Mexico and heard everyone you know give the same advice: "Don't drink the water?"

There is nothing wrong with the water in Mexico; Mexicans drink it every day. In America, we have distilled and purified our water to the point that our bodies don't know how to handle the natural bacteria that live in it. Because of this, if an American were to drink water from a country that doesn't offer pure, 100% H2O, the bacteria in our intestines will be like "WTF?" and the toilet in our hotel room will be our main resting place for the rest of our vacation.

The same kinda thing happens after someone decides to adapt a gluten free lifestyle. Our bodies get used to not having gluten around and then, when your mom makes a big dinner with buttery rolls, pasta salad, and cheesecake, your body says "WTF!?" and goes in to panic mode.

That is why I feel like $#!% today. I gorged on wheat products this weekend and followed it up with a 7 mile hike through the woods. No matter how much sleep I get, I feel utterly exhausted. I can't focus. My brain feels a million miles away and I have this heaviness in its place. My eyes sting just looking at things. I had no fatigue, no exhaustion, almost no lingering symptoms of MS at all while I was off gluten. One weekend of breaking my new rules and they all came rushing back at once.

I would toss this off in the "hypochondria" category except I've found numerous articles and blogs mentioning the same thing. Gluten Free helps people with MS but when they break the rules, it hits them like a septic waste truck.

I made mention on my twitter earlier making fun of Alcoholism as a disease. How, if one can totally rid themselves of the effects of a disease by making a lifestyle change, it doesn't count as a disease at all.

Going gluten free has been the closest thing to stopping my MS in its tracks I've ever tried. And, like an alcoholic, going back to my old ways reminded me how much it sucks to be there.

Be Strong
Be Healthy
NickWithMS
[follow me]

[Edit]

I've had more than a couple people ask me about the changes I've had to make in my diet so i figured I'd post a follow up...

First off, don't confuse Gluten Free with Low Carb. To go gluten free, one doesn't have to give up much of anything... which makes it a much easier diet to stay on that most others.

I switched from regular Pasta to Brown Rice or Corn Pastas. The Brown Rice pasta is nearly indistinguishable from regular pasta when it is hot. The only problem with it is: When it gets refrigerated, It gets hard so it doesn't make for good Pasta Salad. Don't worry about left-overs, though. Once you heat it back up, it's back to its nice al dente deliciousness. 

The Corn pasta is noticeably different than regular pasta. It has a grainier texture and a fuller flavor. You won't trick your kids with this one but, as spaghetti with tomato sauce, I actually like it better!

Our main starch has been Quinoa which is like a cross between rice and couscous in texture. It's not gonna be an exact replacement for anything, but it is a delicious alternative to rice or pasta. 

A lot of foods, even ones that don't say "Gluten free" on the package are, in fact, gluten free - or are extremely close to it. Again, if you're not allergic to wheat, a little cross contamination in the processing facility isn't gonna make a difference. Just look at the ingredients. If it doesn't say "Wheat, wheat flower, processed wheat grains, Malt," or anything else that contains wheat, it is probably gluten free.

As far as eating out goes, It get's a little trickier. Mexican food is easy because you can get almost anything in a corn tortilla... Again, it will have cross contamination from the flour tortillas but nothing to worry about. Many pizza places are offering gluten free crusts. Some of them are amazing, some of them are like a cracker - it's hit or miss... Chipotle has been our go-to fast food joint because we can just order a burrito bowl or corn tacos. Most full service restaurants will have gluten free options, just ask your server. Make sure to mention that you're not allergic, and simply avoiding gluten by choice. This puts less stress on the kitchen.

The hardest thing to let go of has been Beer. I've switched to wine... but nothing takes the place of a cold beer. Oh, and hot dogs... what good is a hot dog without the bun? Not much good at all. Hot Dogs and Beer: what a winning combo.. sigh... though, giving up those delicious foods is a small sacrifice to make considering how much better I feel day-to-day.

I hope this helps clarify any questions you may have.

NickWithMS 

6 years and counting

Here we are. April 16th. Today marks 6 years since my diagnosis.

Things are so much different than they were then. I remember a time filled with fear, confusion, and uncertainty. I suppose the ladder of the three will never go away but I have to remind myself that no one in the world - MS or not - knows what lies around the corner. My uncertainty is no different than that of the other 7 billion people on the planet (http://www.census.gov/popclock/)

Life is better after 6 years. The obvious reason, of course, being that my Multiple Sclerosis has been tamed. With the exception of one minor relapse 16 months ago - one which I feel guilty calling a relapse to an audience who have suffered days of blindness, immobility, and other seriously crippling effects. 

I never stop reminding myself how incredibly lucky I am at this point in my life to be able to enjoy it to the fullest without ever seriously feeling the effects of my disease. We all had to make changes since our diagnosis; little things that we don't even realize we comprimised over the course of time: how easily we get fatigued from taking a hike in the mountains, the fact that our vision gets blurry on hot summer days. I don't even associate these things with MS anymore, they are just part of life. Everyone gets uncomfortable, sweaty, and tired sometimes. It honestly doesnt even occur to me that my daily life is abnormal.

I've been on a reduced gluten diet. I'll post about that later. This entry is getting longer than my target audience has the attention span for. :-)

Stay stong; party on.
NickWithMS

Spring, Magnesium, and Quinoa

Good day everyone!

So remember my resolution to write something every day? Yeah. So much for that... I'm a bad person...

For those of you who follow me on Twitter (@nickwithms), you already know most of this.

I've developed some new symptoms recently. Mainly, muscle spasms. Severe ones. Mostly while I'm sleeping. I will jerk myself out of a sound sleep (anyone else have to read that line twice to make sure I didn't just get real.. REAL.. personal?) because my legs decided they wanted to kick the shit out of CassyWithoutMS in the middle of the night. It's not good for either of us. I had been complaining about feeling more fatigued than usual and finally one of my Twitter followers said "Hey. You're probably tired because your spasms keep waking you up." Why is it that the most obvious conclusions can be the hardest to draw sometimes?

"you had one job..."

After taking the advice of many people on Twitter and consulting with my Neuro, I am taking 250mg of Magnesium every day.

ALWAYS TALK TO YOUR DOCTOR BEFORE TRYING  NEW MEDICATIONS OR SUPPLEMENTS! EVEN IF EVERYONE ELSE ON TWITTER IS DOING IT!

Since I've started taking the Mag, I've slept so much better. I fall asleep faster and sleep through the night without waking up. Better sleep obviously means less fatigue throughout the day which also means fewer regular symptoms. The tingling and tightness between my shoulder blades is almost completely gone now!

After doing some research, I've learned about how wheat has changed over the past 50 years. That's right, wheat. Like bread and cheerios and things... wheat. I know it sounds like my ADD is just kicking in and I just randomly changed the subject for no reason. Well, you're only half right.

Wheat - or more specifically Gluten - causes a ton more problems than just an upset stomach for people with Celiac Disease... It causes problems in everyone. Obesity, Fatigue, Diabetes, and Inflammation to name the most severe. 

"Diabeetus"

Rumor has it there may be a link between MS and Inflammation... seriously... I'm not joking.... So I've also decided to cut the Gluten from my diet. With the help of my friend and author of the health and fitness blog SearchingForCake, I'm going to try to adapt the Paleo Diet to fit my life.

For more info on Wheat, read this book: "Wheat Belly" It's informative and entertaining!

So that's what's going on with my MS right now. Happy Spring, everyone.
NickWithMS

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