Question
At the end of November 2022, I woke up with a numb right thumb. The numbness further spread to other nearby fingers and the right forearm over the course of 2 weeks. At the same time, I experienced high sensitivity (burning sensation to touch) in my neck and occasional numbness in my tongue (right-sided numbness). Symptoms started improving dramatically after that.
At the beginning of February 2023, I developed a “vibration feeling” in my right foot that, over the course of a week, spread to the calf. Slapping the knee would send a wave of feeling up the leg. This eventually got better as well.
In early March 2023, I felt pressure in my left cheek and tinnitus in my left ear. Same story - worsening for a couple of weeks, then recovery.
In early April 2023, my left foot started vibrating (similar to my right foot earlier), but it never progressed. Currently, I am asymptomatic 99% of the time. All in-person neurologic tests are normal.
MRI/Spinal tap
First MRI (Jan 25, 2023) found a posterolateral non-enhancing lesion at the C1 level (partial transverse myelitis, 1 segment, around 8mm long). Thoracic and Brain MRI have always been normal. None of my MRIs changed since then, even though new symptoms appeared. I literally had an MRI the following day after getting those new symptoms in my cheek/left ear tinnitus in March 2023, and nothing was found.
Spinal tap was performed on Feb 3, 2023, and uncovered 7 OBs in CSF (0 in serum).
Medical opinions
As an academic researcher, I travel a lot and have collected quite a few opinions on my case, mostly because they fell into 2 camps. Specialists from the best MS clinics classified this as an idiopathic transverse myelitis, recommending no treatment. That said, they couldn’t give me a good explanation of why I kept getting new symptoms in a relapse-like pattern if this is a “single episode disease” as they claim.
As for the other camp, another well-known MS clinic classified this as a Clinically Isolated Syndrome and recommended starting Ocrelizumab (Ocrevus) as soon as possible, while another Neurologic Institute gave me a full RRMS diagnosis, and I proceeded with Ocrelizumab (at least to stop conversion from CIS to confirmed MS).
Treatment
My first Ocrevus infusion was on May 25, 2023, and seemed to have stopped any new symptom accrual (or maybe this accrual would have stopped anyway). Nov 11, 2025, however, as part of my routine blood work for the next infusion, it turned out that I had severe neutropenia (39 cells/uL). My November Ocrevus infusion was cancelled. After 3 weeks, neutropenia resolved (now around 3,000 cells/uL), but my neurologist now wants me to switch to Gilenya, Tysabri, or Mavenclad (the last 2 I suggested).
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Prof G’s response
The diagnosis of MS was, until recently, based on 4 axes:
Chronicity - dissemination in time
Multifocal - dissemination in space
Pathology - inflammatory and demyelinating
Exclusion of other diagnoses
