redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Nov. 4th, 2024 05:56 pm)
I had a follow-up appointment with Dr. Sloane today.

In no particular order:

The low-tech neuro exam was reasonably good; I did worse than last time on the pattern-matching thing, and better than last time on the pegs to test dexterity.

He wants me to have some blood tests, but I'll have to go back for that, the lab closes at 4:30 and it was about 4:45 when I was done talking to the doctor. Just walk in, they're open 8:30-4:30, I can have this done either in the building I was in today, or another Beth Israel Deaconess location if that's easier.

He doesn't think I need to see the neuropsychiatrist for medical reasons; I think if I'd said I still wanted the appointment, he would have been OK with that too.

I should get an MRI, brain and cervical spine, with contrast. I may put that off until January, I have to figure out what's covered by Medicare, and when. From looking at Medicare.gov, it looks like I'd be paying an annual deductible and then 20% of the "Medicare approved amount"; that 20% seems to be on the order of $100 for an MRI, and I don't know if this would count as one scan or two. (Do more research later, I'm not scheduling anything tonight.)

BID has a specialty pharmacy, and I can get the Kesimpta there instead of having it shipped, he thinks. I won't need another dose until mid-January, and I may wait until the new year to get that, also for insurance reasons. Dr. Sloane also gave me another copy of a Kesimpta info sheet that has a phone number to contact if I need the drug for free.
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Apr. 17th, 2024 10:40 am)
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.
I got several letters from the SS Disability office last weekend, about setting up a hearing on my appeal. This is the stage at which we get to submit more evidence for my claim.

I called my neurologist's office yesterday, in part to ask whether he can help with this, after a single visit. He called this morning and said (reasonably) that the cognitive and neurological stuff is hard to prove, and recommended a neuropsych evaluation. He offered to have his staff make an appointment for that, which I asked him to do.

They called this afternoon to offer me an appointment -- for January 7, that being the first available. I suspect that will be too late to be useful for this hearing, but I made the appointment, and confirmed that I wanted to be on the waiting list for any cancellations.

Also today my eye doctor's office called, to reschedule my annual exam from July to October. I asked to be on a waitlist there as well.

I need to call the lawyer for the disability appeal, but am not sure I can deal with it today. If not, I will call tomorrow afternoon, expecting to leave a message and ask him to call me back. I didn't call him yesterday because I wanted to talk to the neurologist first.

[Noting here to ask lawyer whether we should get in touch with Dr. AbdelRazek.]
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. [personal profile] 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.
I had an appointment with a new neurologist today, Dr. Morgan. The good news is that I like her, and she did what seemed like a thorough and competent exam. The bad news is that as of yesterday, Mt. Auburn is no longer giving the infusions of my MS drug, so I will need a different new neurologist, at Beth Israel Hospital somewhere downtown in Boston.

Also, my previous neurologist seems to have been out the door mentally before he left physically, so I had to have blood drawn to check vitamin D levels. Read more... )

Dr. Morgan also thought that the last brain and spine MRIs should have been with contrast--as in, she started saying something on the assumption that they had been. Separately from that, she was surprised and I think a little worried about how much gabapentin I'm currently taking. One weird thing, she said my pupils were different sizes and asked if anyone had ever told me that. I just sent a message to my eye doctor about this, in case it's both new and relevant.

I was at the hospital longer than I'd expected. I arrived early, and the medical assistant took vital signs, got me to confirm my list of medications, and did two of the low-tech neurology things, including the peg board (with Dr. AbdelRazek forgot last time). And then I sat in the waiting room reading a long time; at about 2:20 (for a 2:00 appointment) someone came in to apologize that Dr. Morgan was running late.

Dr. Morgan gave me a referral to a urologist, not because anything is specifically wrong, but because I have been needing to urinate more frequently, and it might help. That I think is in the queue behind the referral for occupational therapy, which I'm probably not going to do anything about until at least Friday.

This makes I think five neurologists since 2016: El-Khalifa, then a doctor I saw once whose name I don't remember offhand, then Dr. Katz, Dr. AbdelRazek, and (now, once) Dr. Morgan. I stuck with the same neurologist in New York for a dozen years, even after Dr. Apatoff left New York/Cornell hospital and they wanted to give me an appointment with someone who was still there.
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Sep. 5th, 2023 04:08 pm)
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 [personal profile] 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.
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Mar. 2nd, 2023 05:54 pm)
This was a somewhat odd visit. The three previous times I saw Dr. AbdelRazek, they had me arrive half an hour early, so an assistant could do some low-tech neurology tests before I saw the doctor.

This visit, they had me arrive half an hour early, and the assistant took my vital signs and asked what medications I'm currently taking, then took me back to the waiting room until the doctor was ready. I had to ask him for the low-tech neurology tests, but when I said yes, I wanted him to do them, he sent someone into the exam room when he was done talking to me.

The doctor had started by asking me a few general questions about mood and activity. I told him that I'm still staying home a lot, because of Covid. He said he was surprised that I'm still doing that, and doesn't think I need to be. This surprised me.

He seemed to have two reasons for giving that advice. One is that he has "30 or 40" other patients on Ocrevus, who have reduced their precautions significant, and none of them have become seriously ill. The other is that, and I quote, "you have to live your life." What he advised was to keep masking indoors if I'm not eating or drinking, but he thinks I should eat in restaurants (the first example I gave of something I'm still not doing), and if I go to a party, mask most of the time, but it would be fine to take the mask off to eat or drink.

I'm not sure how much of my doctor saying "you have to live your life" is that, like a lot of people who say that, he is tired of the pandemic, and how much is that he's balancing mental health and depression against infection. But if it is a mental health thing, he could have been a lot clearer.

I miss in-person socializing, and if the three of us agree it's safe, I would like to have some friends visit, or go see other people. But eating in restaurants doesn't feel like a good use of our (notional) risk points.

Another small oddity: they had me fill out a questionnaire in the waiting room. It was mostly about my moods over the past two weeks, but they also asked about falls any time in the previous year. I said that "yes," I have been injured by a fall in the past twelve months, and nobody asked me about that.
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]
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Mar. 10th, 2022 05:09 pm)
Before I forget: yes, the Ocrevus interferes with other vaccines. What this means in practice is that if I ever have the sort of injury where they ask when you last had a tetanus vaccine, my answer will be "I'd better have one now."

Also, after talking to my neurologist this afternoon, I decided I do want the Evushield preventive monoclonal antibodies, so he has placed that order and the hospital will call me when I can come in. (That will be in the area the hospital calls the walk-in clinic, even though I need an appointment for this.) They're supposed to be good for six months. He thinks that whether a second dose will be approved depends on whether the FDA thinks this is a reasonable thing for the government to be spending money on, and that depends on vaccination rates and whether there's another variant like delta or omicron driving up case rates.

The Evushield is two intramuscular injections, one in each buttock; having been on Avonex for several years, my reaction was "that's easy" because I won't have to self-inject.
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.)


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.
After my most recent visit to the neurologist, he had them draw blood for tests, one of which turned out to be a "semi-quantitative" covid antibody test. I got the remarkably uninformative automated test results the same day, and am still trying to find out what this test means.

I have now sent three messages through MyChart, and left one phone message asking him to call me about this, and heard nothing. This time, I included the (irritating) point that I know what the test is going to cost me, but not what I'm getting for that money.


I'm following up on my test results from last month. When I saw a doctor at my primary care practice last week, she said that I might need an additional dose of the vaccine -- that is, three plus the booster, for a total of four -- because the MS meds might make me immuno-compromised.

That semi-quantitative test result looks like it might help us figure out whether I need that fourth vaccine dose. So far, all I have gotten is the uninformative automated results, and a note from my health insurance company of how much I'm going to be charged for the test.

Please, what does the "<1" test result mean, and how does this test relate to my care?


I've been happy with the actual office visits (this was the second), and he did respond to my earlier query about the MRI results, but this is more than a little annoying.
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
( Nov. 8th, 2021 05:42 pm)
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 have found a new neurologist, made an appointment for next month, and called Dr. Katz's office to ask for my records, and cancel the upcoming appointments (one longer-than-usual exam, an MRI, and then a visit to be shown how to try the drug we were talking about switching me to. [personal profile] adrian_turtle found me this referral, by asking her neurologist. Since the last time I looked into this, Mt. Auburn has hired an MS specialist who sees patients in the medical office building on Mt. Auburn Street, and he is taking new patients.

I've been unhappy with the schlep out to the current neurologist's office for a while, and the pandemic wasn't helping, because unlike my other doctors he wanted everything to be in person. a month ago, I was thinking that the multiple trips to Wellesley would be annoying but tolerable (the study he was hoping to enroll me in would have paid for the Lyft trips to and from his office).

Now, the delta variant has me feeling more cautious. I'm not cancelling things yet, but if I start thinking in terms of a Covid risk budget again, medically unnecessary doctor's visits aren't in my budget.
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, [personal profile] 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.)

[personal profile] 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 [personal profile] cattitude made us a very nice dinner.
.

About Me

redbird: closeup of me drinking tea, in a friend's kitchen (Default)
Redbird

Most-used tags

Syndicate

RSS Atom
Powered by Dreamwidth Studios

Style credit

Expand cut tags

No cut tags