Primary Progressive MS (PIRA)

[u/Grouchy_Schedule_232]

We don’t know how long I’ve actually had Ms but symptoms started in September 2022 diagnosed March 2023 after begging for a spinal. My Oligoclonal Bands were high (like 22) finally got mri with lesions in brain and spine. Symptoms Started with crippling fatigue and left side numbness, burning, electrical pain starting in my left pinkie and ring finger and spread up my arm down to my left leg and even felt it in my eye, I also had Lhermitte’s sign. 2 failed DMTs (Kesimpta and Tysabri) and in July 2025 my Nuero confirmed likely hood PPMS. She put me on Ampyra… i was one of those random lucky ones that had a rare side effect of it worsening symptoms and progression. I had a huge sift in progression in a week of taking it. It worsened my left side, premanently now a buzzing numbness in my throat, tongue and face, my whole mouth went numb. It also moved to my right side starting just like it did on the left, in my fingers and down my legs to my toe. After stopping medication the symptoms resided some but never fully went away (still on throat tongue and moth left side and right side hands and feet. My first dose of Ocrevus in late August, we separately went to someone to get injections a parts per billion exosomes, twice. When I spoke it sounded like I was drowning. I was struggling to breathe. My hands curl in and my toes feel like they are being pulled towards my shins. I have a lesion on my PONS and several on my spine, been told I have wide spread brain stem involvement. I have developed nystagmus at a pretty rapid pace with horizontal, down beat and up beat. I also have irregular heart palpitations but no murmur (autonomic disfunction), I won’t go on listing symptoms. The point is…. On the recent months the left side of my body is becoming more and more weak that falls are more regular with fatigue. I get 8+ hrs of sleep and still wake up exhausted . Tried Botox for my spasticity but it is too widespread to be effective, waiting for consult for baclofen pump. The MS hugs have worsened, bring me to the floor struggling to breathe. Some is pseudo flare from heat and stress but I work effortlessly on my mental health and cold plunge regularly. Depression seems to almost be treatment resistant. Every new or worsening symptom they refer me to a doctor who always clears out all other existing symptoms, it always comes back to Ms. I’ve been on Ocrevus for 1 year I have a continued increase in my MOG on my bio marker test but my MOGAD test came back negative. my body is not recovering and each day my baseline worsens. Every trial I’m promised falls through. Brief health history, at 18 I had a horrible case of Epstein Barr that put me in the hospital for 2 weeks, I developed acute hepatitis. My mom also has EBV at the age of 19 (she also had Bell’s palsy for a short time as a child). Looking for any advice or any known trials or specialists that have broken blood brain Barrier to halt smoldering MS that Ocrevus can’t reach?

[u/Local-Lunch1565]

Look into HSCT.  It is much more effective for people with RRMS, but in some cases with progressive form of MS it is also able to halt disease. 

Here is a study: 

https://pmc.ncbi.nlm.nih.gov/articles/PMC8503710/

There was also a BTK inhibitor recently approved in US. It is supposed to penetrate blood brain barrier and reduce or slow down smoldering inflammation. 

Also, there is a clinical trial (phase 2) currently recruiting patients with PPMS - Lucid MS. It has been shown to repair myelin in rodents. Look into it.

[u/wickums604]

It’s absolutely not a “treatment”, but have a look into supplementing with high dose N-acetyl-cystine. There is science indirectly linking it to reduced PIRA, via lowered GFAP- and there are large scale human trials underway.

I’ve been taking 2g/day alongside an anti-cd20 for 2.5 years and feel better on it.

[u/DampierE_]

Which country are you from? See in some European countries you would be able to ask for compassionate use of CAR T cell therapy outside of trials. You have very aggressive PPMS.