Every MS patient has a different path; this is mine.

 

Diagnosis and rapid progression

A mountain biker/hiker, business entrepreneur and recently-remarried father of two daughters in 2004, a random mention of an odd cold sensation in my face lead to MRIs, a spinal tap, and a surprise MS diagnosis at 38. I immediately started a disease modifying therapy (DMT), a daily self-injection of glatiramer acetate. 

 

Despite a daily DMT, my ability to walk and use my hands rapidly declined. I worked hard to maintain my mountain sports, but it soon became too dangerous.

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In 2007, I was placed on Tysabri, then a new and risky biologic IV therapy. My disability continued to progress and I needed a cane. After 18 months of further progression, my neuro recommended suspending Tysabri.

 

I sought a second opinion from Mayo Clinic. After a couple days of testing, they diagnosed me with Primary Progressive MS and warned me I would be unable to walk or travel by 50. I was 42.

 

On the long drive home, I decided to ignore those instructions. I would find a way to get healthy...or die trying.

 

Get healthy or die trying

Back on my original med, an improved diet slowed my progression. With a cane and heavy leg brace, I clawed out walking the best I could. ​After hearing I'd be unable to walk or travel by my 50th, I took a birthday selfie walking in Europe. More spite than substance, it was a short victory lap. Despite $1 million of DMT meds, I was in a wheelchair at 51. In fairness, Mayo Clinic's timeline warning was pretty accurate. The speed of my disability progression ranked me in the 90th percentile of MS severity.

 

For my 51st birthday, stubborn Me rode his new wheelchair solo into a Slayer concert. I then bought the Wahls Protocol book and began her MS diet in June 2017. A gearhead systems builder, I adapted her menu into a green "Garbage Disposal Smoothie", intermittent fasting, fermented food, functional mushrooms and cannabis. My MS progression stopped and MRIs were stable. I started teaching at university, from a wheelchair or forearm crutches. At 55, I had an allergic reaction to my DMT. In consult with my neuro, I paused therapy.

 

​​Then everything changed...

In 2020, the pandemic started and a severe trigeminal neuralgia -- a.k.a. "the suicide disease" -- duel changed everything. The extreme nerve pain left me in unable to speak or eat solid food for four months. My days spent in silence with meds that didn't touch the pain or a surgical option my neurologist said would kill me. It was the lowest point of the journey; in a wheelchair and pain, a career I loved over, my marriage coming undone.

 

It also became the pivot on which everything that followed turned.

Now 60. After 2020, my life changed radically. A divorce, loss of parents, more limited insurance, and cross-country move wrecked my support system. Some extreme life stressors that could have destroyed me. Still off DMT, five years passed without an MRI or live neurologist appointment beyond telemed. I doubled down on my diet and novel therapy including sauna and psychedelics. AI became the panel of diverse experts my insurance, location, and a parochial medical system were never going to provide. A trained researcher, I used it to review the literature and form a hypothesis before pressure-testing next steps with.  

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By 2022, my wheelchairs were parked in the garage. I could again walk just with canes, a first since 2015.

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A grim Primary Progressive MS trajectory reversed

In summer 2025, I brought my medical records into the office of a local MS specialist. After a review of my history and current ability, they said,

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"your spinal cord is battered. Freaking horrible. Any neurologist looking at your MRI would ask what kind of wheelchair you use. Yet you walked in here and show recovery that's very uncommon with advanced MS. And you did it without a magic pill." 

 

Since then, my walking continues to improve. My 2016-2021 EDSS disability score had reached 6.5-7.0 (wheelchair). Summer 2025, it was professionally assessed as 4.5, able to walk 300 meters without aid. Spring 2026, I jogged in the yard with my dog and could get around my house, yard, and short errands without a mobility aid. Longer distances still involve a cane. Pain levels and pain meds are also down substantially. While I'm not hiking mountains yet, I am grateful for the daily quality of life gains I feel.

What do you call progressive multiple sclerosis when the progression is moving toward less disability, not more? I don't have a clean answer. Neither do my doctors. I haven't cured MS, though it may be in a sustained remission. My MRIs show no evidence of disease activity. My MS and other biomarkers look mostly favorable. I'm still off DMT, though it's an open question -- meds are an important tool. Everything may change again; MS doesn't play fair, MRIs show my spinal cord is still shredded, and my mobility progress can be brittle.

 

What's next?

I no longer live in fear, While I am grateful to be out of a wheelchair and severe pain, they aren't the boogeymen they once were. I don't know what is next, but it's been six years of this, and the data keeps pointing the same direction. Something real has shifted, something often presented as clinically unrealistic.

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In the meantime,my medical protocol continues to evolve. I live in an active lab with experiments I track with biomarkers and observation. I am willing and able to do things that may not fit for everyone. I am willing to be my own guinea pig, be patient, and don't require (or provide) proof my interventions will work. I do document my lived experience and results in the hope it's helpful to others. I've come to see MS as a symptom of something deeper and I work to address the root causes with microbiome, movement, and mindset tools outlined here. 

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My takeaways? Healing with MS is possible. It's not easy, but it can happen. It's also very hard to recover what is lost; If you have MS or a similar chronic condition, act now. Get very serious about diet and exercise. Find a good functional med doc. Evaluate risk/reward of new med developments. Pharma companies can be an ally, but they're not a trusted friend. Adapt. Push your limits, but respect sometimes backing off is the smart, sustainable move. Keep a positive attitude, no matter what. You can have great quality of life with chronic illness, but it's a choice. My approach is still to Get Healthy or Die Trying.

Hope that’s helpful. Wishing the best for you in health and life!