March 24, 2023
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Photography by Guille Faingold/Stocksy United
It’s such a fraught, personal decision, but after decades of various treatments, I knew it was time for me to try something different.
The first time an MS disease-modifying medication was introduced to me, it was 1998, and I was seeing my new neurologist in Los Angeles.
My neurologist, Dr. Myers, told me that I had “good timing” in terms of my very recent MS diagnosis because up until about 2 weeks earlier, there were only two disease-modifying therapies (DMTs) on the market for potentially slowing the progression of multiple sclerosis (MS). But a new medication with very promising results had just been made available to those of us diagnosed with this rotten disease.
The medication was Copaxone. Dr. Myers enthusiastically encouraged me to begin the once-daily injections immediately. “A nurse will come to your home within a week and teach you how to inject yourself.” Cool.
A shot every day to keep my body, and consequently my life, as stable as it was at that time seemed like a great option and without many side effects, except maybe some scar tissue buildup and injection site soreness.
After approximately 6,570 injections to my stomach and hips (that’s 365 injections a year x 18 years), my hips are indeed indented with scar tissue, and I had many nights of redness and swelling at the injection site. But apparently, according to my neurologist, Copaxone had kept me from progressing as rapidly as I would have without it.
Taking a DMT sometimes feels like I’m throwing mud at a wall and hoping something sticks.
Let’s be clear, though. I still progressed.
Eighteen years later, after that afternoon with Dr. Myers at UCLA, I was having many new symptoms and significant changes in my mobility.
Our hope is always that one of these DMTs is going to keep our MS from progressing or, at the very least, slow the progression down.
But how do we ever really know?
Maybe the drug has slowed down the progression, and sure enough, without the drug, you would be way worse than you are.
Or maybe you would not be much different without taking it?
But it’s all we’ve got. An incurable illness is just that. Incurable. Taking a DMT sometimes feels like I’m throwing mud at a wall and hoping something sticks. And although there has been much progress in the number of DMT options available, there still is no cure.
After 18 years of Copaxone, my neurologist told me he thought there might be something better for me out there. There was a newer medication called Tysabri. Unfortunately, it ended up not being an option for me because I tested positive for antibodies from the JC virus, and I wasn’t willing to take the risk of impending brain death. (The JC virus can lead to PML, or progressive multifocal leukoencephalopathy, which is an often-fatal viral disease, and Tysabri increases the risk of developing PML if you’ve been infected with JC.)
The test always indicated the drug was working.
And then there were rituximab infusions. This medication is approved for treating some types of inflammatory diseases and some types of cancer, but not for MS. Nevertheless, it’s often used “off-label” for treating progressive MS. My doctor recommended it for me in hopes of reducing the number of B cells in my blood, which are thought to play a central role in the inflammatory attack against myelin in MS. So, I went for the infusions every 6 months for 2 years. When my blood was tested several weeks after each infusion to see if my B cells were killed off, the test always indicated the drug was working.
And yet my disease was still progressing. Quickly. I was able to walk for shorter distances than before. My balance was worse. I began experiencing more muscle spasms.
Still, my neurologist told me that rituximab was “the best we’ve got for you as of now.”
So, after 20 years of living with MS, I decided to go against my neurologist’s advice and headed to Mexico for a treatment called HSCT, or hematopoietic stem cell transplant. The treatment is available in the U.S. but at a cost that’s out of reach for most people. Even in Mexico, it’s very expensive but less so.
In my mind, it was my last hope.
I knew there was about a 25% chance it would not work for me, based on my age, how long I had had MS, and the fact that I had primary progressive MS rather than relapsing-remitting. But I thought a 75% chance of stopping the progression was worth a shot. (Excuse the pun.)
Although I know quite a few people who have had great success with HSCT, 5 years later, it is clear that I did not benefit from the procedure. In truth, I had a great benefit for the first 9 months, and then it turned, and my MS started progressing quickly again.
My doctors, both in Mexico and in the U.S., suggested I start rituximab infusions again, commonly given after HSCT, to ensure all the B cells are gone. So, all my doctors agreed that post-HSCT, I might benefit from additional doses of rituximab just to make sure “no B cells were hanging out.” I did about three of those infusions 6 months apart.
My MS continued to progress.
I eventually came to the realization that perhaps I ought to end my DMT treatment and do something different.
About 3 years ago — 2 years after my failed HSCT — I had an appointment online with my neurologist, who had watched the progression of my MS over 22 years. I told him I thought it was time to stop DMTs.
They were expensive.
They were hard on my body.
Still, after 22 years of living with MS, stopping medication seemed scary! Really scary. It seemed negligent to think of quitting the standard treatments for MS. What if they were helping more than I had realized?
And yet, conversely, it felt foolish to continue. It was as if I was just giving myself this sense of false hope when the reality was the DMTs weren’t working.
My neurologist agreed. There was no pushback. There was no questioning. He just said, “I think that’s a good decision.”
Which was great. It’s always best when you and your doctor agree.
I knew that when something is not working, it doesn’t make sense to keep doing it.
And it was also really hard because underneath, I heard a statement that basically said, “I don’t have anything more to offer you.” But after so many years of living with MS, I knew how to move into acceptance. And I knew that when something is not working, it doesn’t make sense to keep doing it.
It was time to do something else.
With the support of my wife, I decided to end treatment with DMTs and try something else.
I went through a series of tests with a functional medicine doctor and discovered additional systems in my body that were under great duress. My functional medicine doctor certainly did not promise me a cure for MS, but she did help me understand how the various systems of my body — adrenal glands, hormones, digestion, and more — were reacting and interacting with each other. I began to understand that by addressing some of those issues with diet and supplements, my health as a whole might benefit, even if my MS wasn’t cured.
So, I implemented many significant changes. I’ve cut out all sugar from my diet, along with gluten and soy. I eat more vegetables and drink more water than I knew was possible.
I can’t say my MS is any better, but at least I know I’m doing everything I can to support my health otherwise.
Sometimes, I wonder if I did the right thing? I may never know.
Maybe I would be worse without the changes to my diet and lifestyle that I’ve made in the last 2 years.
What I do know is that medications weren’t helping, so I did what I thought was best for me at the time. And that is as good as it gets with an incurable illness.
Medically reviewed on March 24, 2023
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