Last Thursday, 9 days ago, I had some life firsts. I couldn’t walk, because my legs basically didn’t work. That was new. Had to call 911, for the first time, because if I couldn’t walk I couldn’t stay in our apartment. I was rolled out into an ambulance. First ambulance ride, at least for me as the primary passenger.
This is after gradually losing muscle strength since late December and early January. It started with needing two hands to pour coffee because I couldn’t lift the caraffe. Things progessively got worse, to the point where I got a rollator so I could go further than a block from our apartment. I decorated it with a Motorhead shirt for a night out.
I was diagnosed with Psoriatic Arthritis a year ago and started medications to deal with that. At its worst, the arthritis also caused some hand weakness, so I figured it was the same thing. I was switching PsA meds at the same time.
By late January, it was obviously not the arthritis. I tried getting into a neurologist, but the first availabilities were around June/July. Another doctor made some calls and got an appointment for 2/28, so I just needed to hold out for a few weeks.
By last Wednesday, getting in and out of bed was difficult, and I could only type about one sentence before I had to stop. Needed two hands to brush my teeth. That kind of thing.
Thursday morning, it took a few minutes to actually stand up, then I immediately fell. On the way down, there was a loud crack from my leg. After laying there for a bit, it seemed like I maybe sprained my ankle, but nothing was broken. I crawled out to the rollator, then sat to figure out what to do next.
I couldn’t walk. I couldn’t safely get into our bathroom. So, staying in the apartment seemed like a bad plan. We wound up calling 911 and getting an ambulance.
Thankfully, I was able to choose hospitals, so I went to NYU. All of my doctors are in the NYU system, and their Neurology program is ranked top in the country, so I figured that was the best place to go.
That was Thursday morning. There were no rooms, so I stayed in the ER until Friday afternoon, but other than that, care was excellent. In total, I had a spine MRI, CT scan, chest X-Ray, lumbar puncture (would not recommend that), and at least 10 blood test draws. Friday afternoon, I was moved into the 2nd best hospital room I’ve ever seen, and only because the other one was 2-3 times as big. Everything else about this room was better. The view, 65” TV, tablet for controlling the TV, ordering food, controlling lights and temp, etc.
Originally I was going to stay through Tuesday, but recovery was so quick they let me out Sunday. While I was certainly happy to go home, by Sunday I was basically fine. That room would be pretty amazing if you could get around easily :)
Anyway, after all that, the diagnosis was CIDP. It’s an autoimmune condition where your body attacks the myelin sheath around your neurons. There’s no obvious “test” for that, except for the collection of symptoms and some test markers. There are several other pretty terrible things that my symptoms could’ve suggested (ALS, etc), but I was extremely lucky on that front.
It’s relatively rare, and probably caused by whatever respiratory virus I had mid December. Apparently what seems like a normal “cold” can trigger a response like this in rare cases.
I had 3 infusions of IVIG: Friday night, Saturday night, and Sunday afternoon. After the first one, Saturday morning, my hands were useful again, and I could get around with the walker. On Sunday, I could walk without the walker.
IVIG is interesting. It’s made from processed blood donations. I haven’t done the Google-based medical research enough to understand it, but let’s just say it was magic. And if you can donate blood, please do so.
On Tuesday, 2/28, I went to that Neurology appointment. The doctor said it might be AIDP rather than CIDP. The difference is “Acute” vs “Chronic”. If it’s “Acute”, then I might be done. Chronic would mean IVIG every month or two, but we’ll cross fingers on “Acute”. Even if “chronic”, it’s not a big deal.
My hand and leg strength as of Wednesday, 6 days after the fall, seemed completely back to normal (except atrophy from lack of use, which should be built back up quickly).
So, Thursday, can’t walk or use my hands. 5-6 days later, back to normal. 2023 has already been pretty wild.
Please donate blood. That’s how they make IVIG. Also, a huge thanks to the NYU medical team. Everybody was amazing.