Neurodiversity

So I woke up on New Years Day unable (or barely able) to move/ambulate. I wasn’t able to push myself up easily, I was barely able to sit up; I had low to no use of my hands, and I had to use my cane (with great difficulty) to make my way slowly to the bathroom…sitting down on the toilet and getting up was hard…later, when sitting on the couch, I didn’t have enough muscle strength to push the footrest down, I had to wait for a friend to help me…it was like being a very large, very shaky, very weak toddler.

I went to my Neurologist two days later (I had an appointment already scheduled), and I was immediately sent for blood tests. I had my follow up appointment today. Two days after the incident (when my blood was drawn) my body showed elevated muscle enzymes. The max boundary according to the labor report is 174. The enzymes in my body were at 627.

They took more blood today (a good day, where moving is easier) to compare it to (important for a differential diagnosis), and according to the lab results which came in tonight (since they were sent in with a big ole STAT written across the bottom) my levels today (on a good day) was 250…still much hasher than 174, though better than 627.

So I may (actually, most likely will) have to have a muscle biopsy (which is good, because it can rule out/in definitely something terrifying, like Muscular Dystrophy, which can be a potential diagnosis); but I have been told by my uncle (a very competent physician, who I called to discuss my results with) that there’s no chance this is related to my ever-soon-to-be-evicted gallbladder…so wishful thinking is more-or-less off the table.

This is, sadly, one of those things where there is going to be a battery of tests, done in steps, there are no easy answers, things have to be ruled in/ruled out; more tests have to be done, etc. until it’s figured out.

However, this (or fear of this, when I first started noticing symptoms) is also why I decided to apply to the MSW program…because I can do case management now, and my plan is to go into counseling…and I can sit down on a chair and talk to people who sit down on a chair or couch, and provide counseling (and do notes using adaptive software) if things get really bad…and if things get extra bad (like, requiring breathing equipment that scares clients) I can always transition into Macro Social Work, and do data analysis, etc.

So things may be as simple (I hope) as taking a pill, or some kind of easy explanation, or some kind of continued easy accommodation like days where I need to use my cane (sadly, I’m not on a statin drug, which could have explained this)…or it might be more complicated…or more scary.

So I’m taking this as pragmatically as I can, knowing that whatever accommodations I need, I have friends (many, actually) who work with/in adaptive technology fields, I am connected as an MSW student and current Medical Case Manager, and I have friends and family who will make sure we handle whatever this turns out to be.

For now, I wait.

#neurology