I feel like I've been pushing this back way too much, but I have nobody to blame but myself - I've considered asking for help for over a year, I've even had this title bouncing around in my head since last summer, as I tried to gather my thoughts, to figure out how to even approach the topic in the first place, I've been pushing back asking for help and just struggling through, I'm sorry I can't edit this any better.
So, mods, feel free to move this thread to the swamp. I intend it to be about a question about specific neurological issues, but I'm still struggling to articulate it so I guess there's going to be personal baggage too, so please bear with me -
For context, in 2019, I thought I was in the best shape of my life. I'd moved in a urban apartment in 2018, decided to start running on the nice path close by and signed up for a half-marathon ultratrail in fall (which I did, just barely, but still, I trained 4 months and ended up running 16 miles cross-country) and then in spring 2019 I'd gotten a part-time job in a gym as a yoga teacher, so between this and my own practice I was doing nearly 2 hours of training daily, and definitely didn't feel like a gym bro, but at least like I'd made up for my basement-dwelling teens. Just a non-braggy, this is the best shape I've been in, and intend to keep caring for it.
Boy, how quickly did that change. I wouldn't jump to call what I have as a terminal illness, nor did any of the doctors I met with in the last year call it that either, but it sure feels that way. Basically, I can barely move, to the point where I often catch myself grimacing and grunting just to effect basic movements, 6 months ago I had a hard time stopping myself from grunting in the stairs, now I'm at that point just from standing up and reaching the door. It's like the legs are foggy and the hips wobbly, with your movements lagging behind where you think they are, add a uncoordinated factor because it's like you never know if 10% or 30% of your mental effort is going to get through as a signal, so you're always undershooting, overshooting, re-compensating... straining your willpower like you're trying to lift a hundred pounds, yet barely managing to walk. It wasn't as bad a year or two ago, but it's progressing fairly quickly, considering I'm nearly totally debilitated, I can still kind of walk by constantly bouncing from one arm support to another, but even though I had good shoulders, they're starting to pinch from straining in weird postures, and in the last couple weeks I've started feeling like they were becoming a bit blurry... Anyways.
Also, my vision has been crashing, actually that's what led me to consult in Fall '21 as I got a job opportunity, failed at basic reading tasks, got an eye test and glasses until they realized the glasses couldn't help because it's the optical nerve that was attacked - I volunteered to lose my driver's license right then (I already felt my motor problems to be dangerous, without putting a name on it), I was hoping to fix myself with a productive role but when the optometrist showed the scan of my retina, the thinned out nerves... I just gave up on that.
I feel like I'm looking at ISO 3200-6400, from those old digital cameras before noise filtering was a thing. There's like a veil of scintillating digital noise, even though my eyes see clearly and in focus, the noise breaks up contrasts and shapes, it suggests detail but at the same time you can't quite pick it up - by now, I have to zoom most UIs so much that they look like mobile layouts, getting close to that fine line between zooming up so much that you become dizzy, and even then I have to lean forward and look at my monitor from 6-8 inches away, slowly moving my head from side to side to follow the cursor...
As the optometrist detected nerve damage, I was referred to a neurologist, and also to an infectiologist because of my particular past (spending half of last decade in latin america, also got bit by a couple ticks the last time I was in Belize - it called the attention of a tropical diseases specialist). You could count the number of times I interacted with the medical system on one hand before, but over a couple months they took about 2 dozen samples, mostly blood but also stools etc, they ended up ruling parasites out (I let the infectiologist know I had spent years barefoot in central america, but came back suddenly for family matters and didn't get to take a standard course of antiparasitics since... I was trying just in case, but of course she didn't want to prescribe anything preventatively.
After those first few months of further tests, since they couldn't trace anything out of the ordinary in the blood samples, I ended up submitting to a lumbar puncture, also had a few scans including over time 3 MRIs came back which showed a couple dozen 'minor' nodules in my white matter and amygdala, as well as a couple cubic centimeter total of compromised spinal nerve, mostly at the level of the cervicals and thoracics. They couldn't quite tell and thought it looked like some atypical sclerosis, and around the same time the puncture results came back, the analysis listed presence of red blood cells (although uncounted at 0 x 10^6/L) and lymphocytes at 2 x 10^6/L. I've got access to my reports, but analysis is usually very terse, if any, but the fact it was mentioned led me to ask about it. I've been answered that was not normal, and it was basically the only out-of-norm result so far, besides from the MRIs clearly indicating something.
At that point, we were a year ago, last spring, and I received a preliminary diagnostic of neuromyelitis optica, NMO. It probably took me a couple months to integrate, even though I'd already seen it get noticeably worse over the previous year and I knew something was wrong, I hadn't admitted it was something clinical until it compromised my job opportunity, basically. It's like I knew something was wrong, but I couldn't even point out what it was, not even that I couldn't articulate it, more that I wasn't even clear about was was wrong, I just knew something was. It only made sense when I understood that nerve damage, how weird it felt when I tried to start running again in 2020, I felt like my feet were dragging even before I got tired, so I couldn't get into it. It didn't make sense that I'd lost shape so quickly so I went to train with my kettlebells but I felt as strong as ever - none of it made sense, but now it's clearer.
So the last result I got was an hematological profile, I don't know how significant it is but some results came slightly elevated:
Éosinophiles/Leucocytes slightly elevated at 0.069 (norm range 0.01-0.05)
Monocytes slightly elevated at 0.9 x 10^9/L (norm range 0.2 - 0.8)
Éosinophiles slightly elevated at 0.7 x 10^9/L (norm range 0 - 0.4)
Basically, that's not much to go on, but it's about all the data we got in a year of tests - and this brings us to last fall, and what I'm currently most concerned about. That is, by fall my neurologist told me, we can't refine our diagnostic any further, at this point we have to look for experimental treatments to NMO, there is this promising category called anti-CD20s, a class of anti-cancer drugs which have recently shown promise in suppressing autoimmune conditions similar to mine - only problem, I'd become immunosuppressive too. When the alternative is feeling like your flame is slowly going out... I thought a lot about the forum and that I should ask about it here, but the desperate part of me jumped on it. "Sure, I don't care if it's experimental, if you think that's what will work, that's what we need." He placed a request with the province's health insurer (I don't have private coverage) and about 2 months later, the request came back denied - the public insurer figured I hadn't attempted a "milder course of action possibly appropriate to [my] condition, such as corticosteroids". I made a mental note to ask here about whether these could apply/relate to my case, but then I set that aside as I tried to prepare for the holidays etc - despite not doing much, it feels like I can spend days struggling to clean and organize, but really I only push for a few minutes at a time before feeling I have to collapse back in my chair for the foreseeable future. Weeks, months start to fly by as I barely shuffle through each day...
Just last Friday I received a phone call that the request had been revised and I'd been granted a prescription for Riximyo, basically to be delivered ASAP. I was asked if I had any questions, from a prior onboarding conversation I knew they didn't proactively discuss any side effects so I only decided to ask how long is the data trail, since when was the treatment deployed - and the lady uncomfortably answered, without any certainty in her tone. "Well, it's got a good history, I mean, in Europe, I think it's been used since 2017, but in Canada I couldn't say..."
And that's basically where I'm at. Some of the eagle-eyed among you might have noticed I had a decent contribution to the forum in '20-'21. That took a serious hit in fall '21. Now you know why. I was the one reeling.
At this point, I'm late as could be. They gave me a date this Friday - it's basically a half-day perfusion, and a second dose after two weeks, the two together are supposed to collapse my immune system for a year.
And I'm supposed to think that's a good thing. And I'm thinking of taking it anyway, because even if it isn't I just don't know anymore, I certainly know nothing else.
Help me, please.
pubmed.ncbi.nlm.nih.gov
