This is what MS looks like.
Only when our voices unite, can we start to see, understand, and validate the reality of living with Multiple Sclerosis. This page is a resource for that validation. Covering the seen and unseen symptoms, it seeks to be a place of understanding; one where the reader feels less alone than when they started.
If you don’t know much about MS, welcome to the party. It’s mysterious. And tricky. And oftentimes frustrating. So I guess it’s a sort of weird party, huh? The fantastic news is that there is an incredibly amount of evidence that the healing properties of diet and lifestyle are WORKING. And even more so that amidst living with MS, you can find answers, hope, community, and empowerment to thrive.
Ok, so. There are two drastically different faces to MS.
The one you see: the physical disabilities, the wheelchairs.
The one you don’t see: zero external symptoms, but still many challenges.
MS “looks” different on everyone. Because of this, isolation and misunderstanding are incredibly common. It’s an extremely unpredictable disease and thus can be difficult to adequately describe to others (not to mention understand for yourself!)
So let me lift the veil a bit. Let’s get that cat out of the bag and other metaphors for bringing the truth to light.
What the heck is it
MS is an autoimmune disease where the body’s own immune system attacks the central nervous system. Yup, the command central of your body – the brain and spinal cord – are under attack by friendly fire. This is the basis of an autoimmune disease. (auto = self, so the immune system attacks itself. More on that later.)
More specifically the outer protective layer of your nerves known as myelin is what gets damaged. The damaged myelin forms scar tissue (sclerosis), hence the name multiple sclerosis. These lesions on the brain or spinal cord are a distinct characteristic of MS.
SO, when the myelin or nerve fibers are damaged, it disrupts the flow of information within the brain, and between the brain and body.
MS is one of the 100+ autoimmune diseases where your body wages a war against itself.
Depending upon the location of the “battle ground” determines which autoimmune disease you have.
Here’s a quick peek at the most common autoimmune diseases.
- MS attacks the central nervous system (brain, spinal cord and optic nerves).
- Lupus attacks the body’s own tissues and organs.
- Celiac, Crohn’s and Colitis each attack different areas of the digestive system.
- Hashimoto’s attacks the thyroid
Bottom line your body is under friendly fire. It can’t differentiate between what belongs in the body and what doesn’t.
The kicker with MS is that there is no cure (yet!) and it’s a progressive degenerative disease. Meaning your symptoms are expected to progressively worsen over time.
Notice I said “expected” there because we’re now finding amazing science that shows it doesn’t have to be this way. (Check out Terry Wahls’ story here where she went from a wheelchair to a bike ride in one year.)
If caught early, it can be manageable. If it’s progressive, it’s still manageable. Don’t let anyone tell you it’s game over. If I have it my way, MS is about to realize it drew the short straw this time.
Most people with MS are diagnosed between the ages of 20-50—at least 2-3x more women than men (some studies suggest hormones may play a factor. Welcome to the sisterhood.)
Approximately 400,000 people in the US and 2.5 million worldwide have MS which means that it’s likely you know someone who has been diagnosed with it.
Why — AKA why you have more control over MS than you think
The cause is still unknown. Which is incredibly frustrating. We know that genetics plays a relatively small role, and other risk factors include:
DNA is the only one you can’t change, obviously. The rest is all epigenetics—the lifestyle habits that can turn those disease-causing genes on or off. Scientists are now seeing the disease is triggered by an environmental factor in a person who is genetically predisposed.
This is important to reiterate: a diet or lifestyle habit can turn the gene on. So, while the conventional medical response is to take an immunosuppressive drug—a prescription medication that shuts down the part of the immune system that is attacking the body—if the diet and lifestyle was the trigger, doesn’t it make sense to address the root cause?
As Dr. Wahls puts it, you could plant the same seed in nutrient rich soil as well as in nutrient depleted soil and you will grow two completely different plants. The one that grows in nutrient rich soil will flourish, the one planted in depleted soil will be weak and wilted.
One of my passions is helping you turn your life into rich soil.
Even though what MS is doing within the body is a big deal and feels as though it should be clear and easy to identify, there’s no easy, definitive test for MS (instead, relying on symptoms, MRIs, visual tests, spinal tap) which means diagnosis can be missed, delayed or even incorrect.
And since symptoms can vary so greatly, unless it’s a classic mobility symptom, MS isn’t always on the radar of diagnosis.
Try telling your doctor you’re tired and have trouble concentrating. He/she will tell you to join the rest of the US population. Ok, they may not say that, but they’ll think it.
Obviously, the fatigue from MS is not the same as the average person’s most exhausting day. It’s like comparing a paper cut—painful no doubt—to having your arm amputated. It feels like someone borrowed your body overnight to run a marathon… so when you first wake up in the morning, that’s how you feel.
So when you do finally get a proper diagnosis, it can be incredibly validating:
- Your fatigue is not “laziness.”
- Your trips or falls are not “clumsiness.”
- Your central nervous system has been under attack. Worst of all the “attacker” is your own body!
The progress, severity and specific symptoms of MS can not be predicted. Cool huh? (Sarcasm.)
Common symptoms include:
—the inability to concentrate
—Altered sensation e.g. tingling arms
—paralysis on one side of the body
— Difficulties with mobility
The most common course of treatment is disease-modifying drugs, but as you know, I am on a mission to heal on a deeper level through nourishment. (More on that here.)
Getting specific— the 4 Stages
Now that we covered the basics above, here’s some more nitty gritty on this disease:
- CIS — Clinically Isolated Syndrome
This may be the first clinical sign of MS and means you’ve experienced an MS episode for at least 24 hours. You don’t have to have lesions on the brain to experience an episode, in fact if you don’t have lesions, the buck may stop here for you. Without lesion, you’re far less likely to develop MS. If you do have lesions, RRMS may be in the future. (Remember we’re not letting MS call the shots around here though.)
- RRMS — Relapsing-Remitting MS
This is where the majority of the MS sisterhood lives. It means you experience an MS attack/flare for a period of time—at least 24 hours but beyond that it could stay for days, weeks or months. I told ya this disease is unpredictable and has a mind of its own <face palm>. Usually after this period of time comes a welcomed remission when symptoms partially or completely disappear. The good news is that the disease doesn’t progress it simply goes from active to inactive.
- SPMS — Secondary Progressive MS
If symptoms from RRMS do progress without remission, you’re considered to have SPMS. Here it’s believed that mobility progressively declines without improvement in the future. (This is what the incredible Dr. Terry Wahls had and proved science wrong by showing you can reverse the progression!)
- PPMS — Primary Progressive MS
This is the least common form of MS. In this stage symptoms showed up and don’t go into remission. They’re basically setting up camp in your body and have no intentions of leaving.
My hope is that this overview of information brought light to this shadowy disease. If you want to learn more about how to go from pharm to table, how to nourish yourself resilient, I’d love to talk to you here. Or you can spy around on my services page for more information.
Pssst: other interesting MS articles for you:
This is What It’s Like to Live With MS, Self Magazine June 2016
Top 10 Myths About Multiple Sclerosis, Health.com, October 2012
The War of Art on MS, my-ms.org
You Know You Have MS When… , MSAA, July 25, 2014