Praise then darkness, and creation unfinished

I just got a call from my neurologist's nurse (Pamela Johnson), asking how she can help with my disability case. I described the situation, including that I'm not sure what evidence will be useful, and she offered to contact my lawyer directly so he can send her the paperwork to fill out, which the doctor will then look at and presumably sign.

Also, since I had her on the phone, I asked about my prescription for the new MS drug, Kesimpta, and she's going to follow up with the specialty pharmacy about it. It sounds as though they would be willing to have someone come here to show me how to inject the first dose, rather than me going to the neurologist's office, which is what we'd discussed last month. I told her that I had experience self-injecting, with the Avonex, and she said that this is subcutaneous, so easier. I said that I know it will be easier, but it is different, and among other things I want someone to show me appropriate locations for the injections. Also, it's been a dozen years since I was using Avonex, so I would probably want a refresher if this was also intramuscular.

Yesterday's mail contained two envelopes from the Social Security disability determination office for Massachusetts. One of them asks about any medical care I've received since the last paperwork I filed, and the other looks like a form I sent them at an earlier stage of this. That would make sense given that I asked them to reconsider turning me down. cattitude pointed out that the first thing I should do is call the lawyer who is representing me about this, so I put everything back in the envelope and wrote myself a reminder to call him today.

I called the lawyer this afternoon, and after saying he was glad I had called him right away, he asked me a bunch of questions. It took me a little while to realize that he was filling out the form as we talked, but at the end of the call he said he would fax the form over to them right away.

The lawyer also said that I can wait to update the medical information; I'd thought they might at least want to know about the pulmonologist. I did describe the balance PT, but I don't know if he added it to the "function report"; I didn't give him the therapist's name. There's no point giving them the name of my new neurologist yet, since so far I'm just a name in his appointment book.

I made that appointment with the neurologist at about 10:00 this morning, when the MS clinic at Beth Israel Lahey called me. I will be seeing him on March 21st, and somewhere between now and then I will look up the address ("Shapiro clinic, 8th floor") and the doctor's first name. Jacobson is a moderately common name, but I assume that if there were two doctors Jacobson there the scheduler would have given me his full name.

This was less organized than usual, which I suspect is because the doctor is just back from paternity leave, and will be leaving Mt. Auburn hospital at the end of next week. Given that timing, I will probably call the MRI department to reschedule at least part of my upcoming head, cervical spine, and thoracic spine MRI: Dr. AbdelRazek suggested doing head and cervical spine as one part and thoracic spine separately, because that will give two sessions of about the same length. (His last day in the clinic will be the 13th, meaning he wouldn't be reading a report on an MRI starting around 5 p.m. that day.)

I only realized while describing this to cattitude that neither the doctor nor I had remembered the low-tech neurology test that involves moving pegs into and out of holes. We did the other low-tech neurology test, a pattern-matching thing, because I told him about having been frustrated by difficulty with a jigsaw puzzle a couple of months ago.

I also have a referral to physical therapy for balance, because of the recent falls I described to the doctor. Not sure I will use that, but it can't hurt to have it in their system.

I will be following up with Dr. Alison Morgan, at Mt. Auburn: Dr. AbdelRazek said that Dr. Morgan has training working with MS patients, but that was around 2003, and she's been doing general neurology. But I would rather see someone at that physical office than go out to Wellesley to see Dr. Katz. (I thought Dr. Katz was OK but only OK, which is relevant here.) Dr. AbdelRazek mentioned in passing that Brigham and Women's Hospital, where Dr. Morgan trained, has the largest MS center in the area. Since I'm not living on this side of the river, that might be worth looking into if I don't like Dr. Morgan. The first available appointment isn't until December, but since I saw Dr. AbdelRazek today I don't think that should be a problem.

I asked about blood tests before the Ocrevus infusion, so Dr. AbdelRazek checked. I most recently had those tests in April, so don't need to worry about getting them before the infusion.

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 heard from my neurologist about that "semi-quantitative covid test":

He says the <1 result means that I have "no detectable antibody response to all vaccinations thus far," because of the MS medication.

I tried googling to see what a negative covid antibody test might mean, but the CDC and FDA just want to tell me what a positive covid antibody test would mean, not a negative one. So I wrote back, and asked whether I need to behave as though I'm not vaccinated. I'm hoping my T cells are primed and ready to deal with this virus, but that's a hope, not a fact.

The doctor did say that if I want to get a fourth vaccine dose, he'd recommend getting it 3-4 weeks before my next Ocrevus infusion, which would put it in the second half of March. So I'm also going to ask Carmen what she thinks about a possible fourth dose the next time I talk to her, in January.

The doctor also apologized for the delay, which is reassuring, and offered to give me a letter of "medical necessity" so I won't be billed for tests. (Another look at the message from the health insurance suggests that what I'm actually being billed for is the JC virus test, which I don't think was medically necessary, but the positive test result from ten years ago isn't in their system, so they might buy that.)

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ETA: I have some more information (from someone who is not my doctor). They confirmed that I probably have some useful protection from T cells, and also that given the timing of my booster dose of the vaccine last month, I should talk to my doctor about a fourth dose, carefully spaced at least 12 weeks after the most recent Ocrevus infusion, and at least four weeks before the following Ocrevus dose. That would mean sometime after January 13 and, conveniently, my next appointment with my doctor is for January 11th.

This was a follow-up from when I saw Dr. AbdelRazek in September (which was the first time I'd seen him). We discussed my test results, in the course of which he told me that there were no earlier comparison images for the thoracic spine MRI. I knew I'd had that done since moving to Boston, so it should be in their records; I told him I'd look for the date when I got home. It turns out to have been May 2016, so might not be significantly more useful than the one he could find, from 2014, which I think he'd forgotten about when he started that conversation--but that MRI should be in their system, the test was ordered by a Mt. Auburn doctor and done in their radiology department. I have sent him the info, in any case.

Other than that, he's basically happy with what these MRIs (cervical and thoracic spine) showed, The odd blood test results from the Mayo Clinic turn out to be testing for a few obscure diseases that can mimic MS, and he said he does this with all his new patients.

However, based on one of the other blood tests from September, he wants me to increase my vitamin D dosage, because while my current blood level of 46.6 ng/mL is within the normal/healthy reference range of 30-100, for his MS patients he wants it to be at least 50. So, I'll try 4000 IU of vitamin D a day (instead of 3000) and we'll check again in four months: he asked how soon I wanted to come back, and I'd been thinking that every six months might not be frequent enough, so we'll try this. My Washington neurologist saw me every four months; Dr. Apatoff, back in New York, every three.

The visit ended with a little low-tech neurology: moving pegs into and out of a pegboard as a test of dexterity, and a pattern-matching one that assigns random symbols to the digits from 1-9, then presents you with the symbols and asks you for the numbers. Dr. Katz's office did these with pen and paper; Dr. AbdelRazek had it on a tablet computer, so touch-screen.

I also mentioned having gotten a hepatitis B booster vaccine after Carmen noticed that the tests he'd ordered didn't indicate immunity, despite my having had three doses in 2011-21. He asked why I wanted that immunity ("do you work in education?") and I said no, it's something one of my partners asked for. He also said that he wouldn't be surprised if the booster made no visible difference, and I said that yeah, if one more dose of that vaccine doesn't do the job, I'm not going to pursue it further.

I saw my neurologist today, for a basic checkup and to have blood drawn for tests. (I could have gotten the blood drawn elsewhere, but it made sense to combine them.) We realized that *everyone* had forgotten that I was supposed to have another MRI in November or December. So he's contacting Mount Auburn to have them schedule one for me, in a process that looks something like:

Mt Auburn: We've scheduled you for March 5 at 4:00.
Patient: That doesn't work for me.
Mt Auburn: OK...March 3rd at 2:00.
Patient: All right.

I don't remember whether than save time by saying "Sorry, that doesn't work. How about a morning appointment?" But they insist on being the first party to suggest a time.

It was more difficult than I expected to get across to him how hard the current hand pain is. He kept asking things like "how bad is the pain?" and "is it all the time, is it?" That anything I do with that hand might hurt, even if it didn't the previous time, also didn't get through. When I started explaining the tings that are difficult or impossible right now, and the list included not only "typing" but "use a knife and fork," he compehended why this particular thing is for me. I don't appreciate a doctor whose response to being told that pain in one hand was making things difficult was something like "it sounds like the bit of arthritis that everyone gets when they get older."

It may be time to check again with my doctor or health plan, whether her "we only refer within the Mt Auburn system" would stop me from seeing a neurologist outside that system, if the neuro is in-network for my health plan.

After I saw the doctor, cattitude and I met on the common and walked into Chinatown to try a random restaurant, to generally support the neighborhood economy while enjoying ourselves. Unfortunately, the place we tried wasn't very good. We clearly need to try again, soon.

I finished and sent back a copyedit for *acm queue*. Usually the material they send me isn't as close to the headlines as this month's has. This article mentions both the coronavirus and the US-China trade war; something I proofread a week or so ago referred to the recent 737 plane crashes. (All the references made sense, which doesn't exactly help.)

adrian_turtle came over for dinner tonight. She was away for a few days, and told us about her trip; I mostly told me about my day. It was good to see her, and cattitude made us a very nice dinner.