Praise then darkness, and creation unfinished

I just got back from the neurologist's office, where the nurse showed me how to use the self-injecting pen with my new medication. It was all easy, but one thing I didn't know ahead of time is that I have to wrap my fingers around the device before using my thumb to push the button.

This is very different than the process with the first MS drug I was on, Avonex (an intramuscular injection, and a very visible needle. This is subcutaneous, and I never even saw the little needle. The nurse said I can inject it anywhere that's convenient. I'm going to either do the injections myself, or get cattitude or adrian_turtle to do them for me, but the nurse said she has a patient who comes in every Wednesday to have her inject the drug.

I then asked when/whether I need to contact the specialty pharmacy for refills; she said yes, and she'd advise doing it when I do the next injection, a week from now. (The first few doses are given close together, then it's monthly.) I also asked her if she'd heard from the disability lawyer about the forms for my appeal. She talked to the lawyer a week ago, but has not yet received the paperwork he said he was going to send. I am still waiting for him to answer my email, and think I will call him tomorrow if I don't hear from him first.

I have just been reminded that I am capable of writing down a doctor's appointment for the wrong day, remembering the wrong date, and answering an automated confirmation email without noticing. Fortunately, both the actual appointment and the date I wrote down are later in the week, so I haven't missed anything or had to scramble. Also fortunately, nothing else needs to be rearranged.

Weirdly, the reason I checked this was an automated MyChart message about a test result popping up on my phone,. For some reason, that had me thinking "oh shit I'm supposed to be doing telemedicine now!" I looked at the list of future visits on MyChart, and saw that I have telemedicine appointments in May and July, but also an in-person on Thursday afternoon (not Wednesday).

The message was about more results from the blood draw before the Ocrevus infusion, showing that I had effectively no B cells before the treatment. In my specific case, that's not a problem, it's what we're aiming for to control the MS. (MyChart flagged that result as "low," of course.)

I saw my neurologist (Dr. AbdelRazek) today for my semi-annual checkup, and one of the things we discussed was vaccines. He thinks I should get most vaccines, because T cells exist, but doesn't think I should bother with the flu vaccine, because that one isn't very effective in people who aren't taking medication that knocks out their B cells. I didn't ask about the omicron booster specifically, because I didn't think of it: I was asking about a second dose of Evusheld, and whether there's an MS medication that is as effective as the one I'm on now, and doesn't interfere with vaccines. [There is one, Tysabri, which I have already taken as many doses of as I can safely have in my lifetime.]

I told him I'd been tested for anti-covid T cells, and the test found that I do have some, and he was surprised and interested, because he hadn't heard about that test. I used MyChart to send him a link to the faq page for that test, and he thanked me.

He is going to look into a second dose of Evusheld; as far as he knows, the FDA emergency use authorization for that is for only one dose per patient.

I asked the doctor to write a new gabapentin prescription, for the dose I'm actually taking; he did, and Capsule will be delivering it this evening. I told him that yes, at that dosage it works very well, meaning I only have leg spasms occasionally and they are much milder than at the lower dosage.

He says I am clinically stable, based partly on the low-tech neurology, things like moving pegs in and out of slots, walking 25 feet, and having a light shined in my eyes, and partly on my answers to his questions. He is putting in an order for an MRI, head only, no contrast; Mt. Auburn radiology will contact me to schedule that, and if I don't hear from him within a week after the MRI, that means it's good news. My next MRI will be head, cervical spine, and thoracic spine, probably with contrast.

He think my previous doctor's diagnosis of pseudo-bulbar affect was correct, even though I didn't respond to the drug that's commonly used for that (Nudexa). He said the mechanism of action of mirtazapine, the antidepressant Dr. Segal prescribed along with the bubropion, is similar to Nudexa's. This doesn't seem to have any clinical relevance--the treatment I'm on is working pretty well--but I'm noting it here anyway.

[as usual, this is partly for my later reference]

I am staying home from a party/barbecue that I wanted to go to, because it's just too hot outside for me (87F/31C). This has been the shape of almost all my recent summers, is unlikely to change barring weird* medical advances, and not being able to outdoors on hot days interacts really badly with sensible covid precautions.

This particular symptom interacts badly with sensible covid precautions, and it reminds me of other ways the MS is a limitation, and I Do Not Like This. We may be going out to dinner with adrian_turtle's other partner and some of his family next weekend. I really hope next Saturday is cooler, or at least that Saturday evening is cooler than this afternoon.

Given the intersection of MS symptoms and covid precautions, it may be time to look into cooling vests again. Air conditioning works at home, but people enjoying air conditioned restaurants or shops usually don't want any of the windows opened, for obvious reasons.

*"Weird" medical advances because one of my MS drugs had the really excellent side effect of giving me back my heat tolerance. Unfortunately, it would have been too risky for me to stay on it for more than 18 months, and "improved heat tolerance" isn't something they're actively looking for in the disease-modifying agents [sic] for MS, so it wasn't listed as a medication effect or possible side effect. Maybe there's another MS drug with that side effect, but I suspect I won't find out except by chance. [Having written that, I am going to try to formulate a useful search phrase.]

Given