I Have MS ... But MS Doesn't Have Me
I have MS...but MS doesn't have me is dropped freely and formidably among those of us who live with multiple sclerosis. But that doesn't mean it's overused. And here's why.
Outside of being an illness, MS for many, becomes an exercise in self-realization. Getting a diagnosis like MS is a game changer, a moment of mortality that can open up an internal dialogue. For me, I desperately tried to gauge the severity of what I was dealing with. I began to think about who I was as a whole. Then, I worked to find people who I could trust help me get better. This opened me up to taking 66 pills a day.
I Have MS … And Kickass Clinical Doctors
The first people I found after my diagnosis were the neurology team at Mt. Sanai. I could not have been more grateful to get help from a group of people who understood the illness. They saw the enormous active lesion on my C4 vertebrae, explained my treatment options and got me on Copaxone all within 3 weeks of having my first episode. But my onset of MS brought on symptoms akin to a 24/7 hangover - a feeling like I was getting a serious cold without the sniffles - a storm cloud of malaise that was omnipresent and unpleasant. When I asked my neurologist about how to fix this, he looked at me with a combination of matter of factness and empathy (more the former) and said:
“If you drop a glass, we can help you, but if you don’t drop the glass, we can’t help you. This is the nature of MS”.
Translation? My neurologist had an artillery of solutions that could fight against symptoms that involved motor function problems, but my internal physical well-being proved a much more complicated issue.
I Have MS … And A Holistic Practitioner
I couldn’t fathom feeling this bad for the rest of my life and, while I respected the status quo, I felt I needed more. When I found an out-of-network osteopath who didn’t care I had MS, I knew I had stumbled outside of the norm to something that would change my life forever.
Dr. George Kessler works out of a crowded office on West 65th Street and goes down in my book as one of the best listeners I’ve ever met. He also didn’t care that I had MS specifically, and viewed this “issue” not as a disease but as a manifestation of my body going through a very interesting process.
“Why do you have MS?” he asked. “MS is an inflammation of the nervous system. What might be inflaming you?”
I didn't know but he was intent on finding out. Many vials of blood and three stool tests later, Dr. Kessler determined I had high levels of mercury in my system and bad bacteria in my gut, which wasn’t allowing me to process nutrients properly.
“I’m going to rid your body of heavy metals, wipe out the bad bacteria, re-inoculate the good bacteria, rebalance your system and ideally you are going to heal yourself.”
He went on to add that he had gone to medical school and had been taught you couldn’t repair damaged myelin. Turns out school and practice are two different things, so he also mentioned but he’d seen damaged myelin repair itself in his practice and I should plan on it.
I Have MS … And Supplements
Along with my Copaxone, I started a major supplement regimen with Dr. Kessler. For added value, I put a sign on my mirror that read “Reverse it” with "it" being the lesion that got me diagnosed in the first place. Reverse it. I was religious about following suggested protocol and sure enough, months later, they pulled out the films and there was nothing there. The active lesion on had disappeared. The seemingly impossible had become my reality.
I Have MS … And Adversity
During the months leading to this incredible moment, I showed my neurologist the supplements I was taking, and he was less than enthused. In fact, he told me he wanted to get a camera because in his 25 years of dealing with MS, he “had never seen such an expensive circus act”. It was hard not to feel recognized for the massive effort I was undertaking to feel better, though through numerous follow up conversations, I did come to understand his perspective.
I Have MS … And There's Research Coming Down The Pike
Supplement regimens are not clinically proven and investing in something unproven could be a real money waster if not successful. And my regimen was an out-of-network financial risk that I was privileged enough to be able to take. I am so happy to have a positive outcome and to say that I remain lesion free (it’s been 8 years).
I’m also happy to report that the clinical world is working to incorporate research on areas like supplements, diet and myelin regeneration. This year alone, The National MS Society is investing $28M to new MS research that explores these vital areas.
Just a few weeks ago, I spoke at an event hosted by the New York chapter of the National MS Society that focused on MS and wellness. The biggest name at the event was chef extraordinaire Mario Batali. Unbeknownst to many, Batali has a cousin with MS (who also spoke at the event) and he jumped on the chance to be involved with the cause. (I will now forever think of his orange Crocs as homage to MS.)
Chef Batali’s cousin gave a moving play-by-play of her recent onset of MS. Dr. Patricia Casaccia of Mt. Sanai talked about studies looking at the microbiome in the gut. She’s so passionate about the results that she’s spending her own savings on her research! And Mario Batali talked about food and poop; specifically the ways you can help your system work better choosing organic and seasonal foods.
Those affected by MS are beginning to ask more questions and to seek potential treatment options that explore ways that make them feel better NOW. This is a shining example of not being "had" by MS and huge in the realm of healing.
I Have MS … And Faith
I continue to treat my MS with supplements, healthy diet choices (no dairy as it inflames me) and with a DMT (Tecfidera now). Interestingly, people who hear my story often don’t hear that I treat my MS with complementary AND conventional treatments. They are not mutually exclusive and when I think about them, I see powerful parallel paths.
MS’ers are resilient and I meet more of them daily and it's clear they are getting into the drivers seat to their own health. We are actively seeking different things to make us feel better. What we find may not cure our MS, but at the very least, they can serve to empower us, and that, in itself, is great medicine.