I get a lot out of my MS group, my meditation, and my own habit of looking on the bright side — a factory setting I don’t have to work for.
At the same time, I know that for many years I was telling myself things that simply weren’t true about having MS: that I could handle it without drugs, through diet and exercise alone. Although I’ve been on whatever my neurologist recommended since 2011, by 2019, I had started using a wheelchair outdoors and needed a walker indoors. I’ve been trying to come out of that wheelchair ever since. If that is delusional, it also gives me a goal to hope for, a basis for my workouts.
I have to balance accepting reality with the real hope I see in a couple of drugs that are working their way toward FDA approval. Right now I’m turning over two possibilities, and today I want to look at the one furthest along: BCMA CAR-T therapy.
Where I’ve Been
When I first saw my neurologist in 2011 to review my first-ever MRI, he told me I had accrued a debt in transected axons I would never be able to repay — meaning I should have been on Avonex when it became available in 1996. I heard him. He also told me that it was all water under the bridge, and not to worry about it. He put me on Tysabri/Nataizumab, and it immediately seemed like a miracle. I could feel the drug doing its work as it coursed through me in the infusion room: better balance, less oppressed by my own body. After a few months — months in which I felt so much better, months in which I could even run lurchingly for five blocks — I quietly convinced myself I had somehow skated through thirty years of untreated MS without accruing real permanent damage.
I hadn’t. I went JC positive, which raised the risk of contracting PML to an unacceptable level. https://msselfie.co.uk/dmts-safety/natalizumab-pml/. I also started getting recurring UTIs, which I’ll blog about later. I had to find a drug for which being JC positive wasn’t exclusionary.Having to quit Tysabri because you start testing positive for JC happens, and most of these patients will tell you Tysabria/Natalizumab was the best MS drug they were on.
After Tysabri- and I never felt so well as I had on Tysabri – I moved to B-cell depletion therapies: first Rituxan, then Ocrevus. Both are given by IV infusion every six months. Rituxan is derived from mouse cells; Ocrevus from human cells, which reduces immune reactions. Both work well for relapsing MS. But I kept getting worse.
When siponimod came out for secondary progressive MS, my doctor suggested I try it. Within a month my walking was visibly worse, and I stopped immediately.
Then I read an article by Dr. Gavin Giovannoni about a 55-year-old woman with smoldering MS — also on Ocrevus, also stalling — who switched to cladribine. Something clicked. https://gavingiovannoni.substack.com/p/q-and-a-22-smouldering-ms-on-ocrelizumab. I decided to try Mavenclad, the oral form of cladribine, formulated for MS rather than cancer. The course of treatment is 20 pills taken in four 5 pill tranches over two years. It’s genuinely difficult, with a lot of odd pain, and just leaves you exhausted. I finished Mavenclad in June 2025, and 9 months later, I’m encouraged. I’ve had some astonishing moments walking in my apartment. My swims are better — longer, more coordinated, with quicker recovery.
The confounding factor is the constant UTIs. They undo everything, wipe out my progress, and set me back. I’ll write about that in another post. I used to tell my neuro that the UTI were going to put me under before the MS.
The New Frontier: Anti-BCMA CAR-T Therapy
I’ve probably been unrealistic about my prospects with any drug. Still. When I read that one patient in a small clinical trial went from an EDSS of 6.5–7 — walking sticks and a wheelchair — to an EDSS of 3.5–4 — moderate disability, fully ambulatory — my heart leapt. https://gavingiovannoni.substack.com/p/the-lazarus-effect-in-ms. I’ve been using a wheelchair since the fall of 2019. The idea of getting back to a walker, maybe even walking sticks, to walk around the block again, fuels my PT and my research into MS therapies.
The study was remarkable: only five patients, one primary progressive and four secondary progressive. The therapy assumes the immune system has gone haywire — that plasma cells have taken up residence inside the brain and are attacking it from within. Doctors collect your own T-cells, engineer them to hunt down a protein called BCMA on those plasma cells, and infuse them back. One infusion. But first, chemotherapy — to clear out your existing immune cells and make room for the new ones. You have to spend about a month in the hospital. Burning down the forest to stop the fire. Once the harmful cells are gone, you receive an infusion of your own reengineered cells to repopulate your system.
The results: improved walking, improved disability scores, remission without ongoing medication in most patients. The risks are real too — chemotherapy, hospital admission, cytokine release syndrome, a crash in blood cell counts. I’ve heard that Columbia Presbyterian is going to be starting an investigation and I am tracking this down.
Of course I want to get better. I’ve been saying I will get better for years as I’ve gone from walking unassisted, to hiking sticks outdoors, to a wheelchair outside and a walker indoors. The progression has been real and undeniable.
And what I’m reading now gives me hope. I’ll probably be buried in my wheelchair, not having completed my latest blog post about the latest potential cure. I don’t think this means I am in denial about how bad things are, just that I am always hopeful that things can be better.
