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The forgetful neuro

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    The forgetful neuro

    I've probably mentioned my neuro, the one I've been seeing once or twice a year for about 3 years now. Since office visits by phone came along, she and I have had a few of those, and for one of them I waited for quite a while at the scheduled time and finally called, only to find out from someone at the office that she'd need to reschedule and would call me some time later in the day. I waited for hours.

    OK, COVID-19 was making life difficult for most people. I could understand that.

    But recently Viatris (Mylan), the company that puts out the generic Copaxone I'm taking, put through a request for a replacement autoinjector. They told me it was denied because the doctor had said I'd need to see her before she'd prescribe it. No one from her office had called about this. I'd been waiting for that device to be sent.

    I was getting along without it and it wasn't urgent. I decided to wait until the next phone appointment (scheduled for mid-June) and bring it up at that time.

    Then I needed to refill the glatiramer acetate prescription, which I'd been refilling every month since December. This time the pharmacy had to call the doctor. Once again nobody called me to let me know what was going on.

    I mistrust this pharmacy so much that I try to keep careful tabs on my rx's and make sure they're not dropping the ball. So I called them to see how that rx request was coming--and learned that the doctor had refused to refill it.

    "Why wasn't I notified?" I wanted to know. There was no adequate response to that.

    I immediately got on the phone to the doctor and learned from her that according to her records I wasn't taking that drug.

    She was looking at a form sent to her from Shared Solutions where they had checked "Patient not taking Copaxone." I guess she hadn't bothered to look at any other records she surely had.

    Shared Solutions is the patient-support network set up by Teva, the company that produces Cp[axone, the brand-name form of glatiramer acetate.. At one point many months ago I had given them a call to find out about the possibility of returning to the brand-name form, which I'd been taking 10 years before. It turned out not to be feasible because of my insurance restrictions, of course, as I strongly suspected it would be. But I was looking around for an arrangement that would make it easier to get refills in a timely way, looking for a way I could have the syringes delivered directly from the company, which is the way I usually got Copaxone, years ago. The people at Shared Solutions must have sent the doctor this form.

    Yes, to be sure, I haven't been taking Teva's Copaxone. But I have been taking its generic form, and the neuro should have known that (IMO) since (1) she wrote the original prescription and wrote it for the generic form, and (2) she and I discussed it at some length during a phone appointment, for which she should have a record, and (3) she was probably aware that I was refilling it regularly as I believe the pharmacy had called her before about it.

    She seemed not to understand that Copaxone was one company's name for a drug that was called something else by another company.

    So yesterday morning I spent well over an hour just calling and waiting for calls and being put on hold with the pharmacy as I tried to sort this out. I was counting on having the rx picked up today, the day when the shopping service shops for people like me who use that service. If I don't get it today, I will have missed 4 shots. I've often missed one shot by just taking it a day late but I don't want to miss 4 of them. That is a week and a half as it's taken 3 times a week.

    But unless I want to pay someone to get over to the pharmacy (20 minutes away from here) by this evening or tomorrow, that's what will happen. This isn't going to be fun.

    The pharmacy told me by phone that they could have it ready by noon today if they could have the rx by yesterday morning. I got the rx to them in time but their Website says it will be ready by 7 PM today. Too late for my service. They won't wait around for 7 hours for my rx. They're done by noon. Maybe "by 7 PM" means it will really be ready in time anyway. That's been known to happen in the past. I'm hoping.

    Shouldn't a neuro be more on top of the rx's her patient is taking? This neuro has caused me to be quite unsettled. She's making it clear that I've fallen through the cracks. She doesn't know about what I'm taking because she probably has many patients who are much more seriously affected by neurological disorders than I am, younger people with their lives ahead of them. I'm way at the bottom of her list of priorities.

    I like being distant from doctors because it's a sign that I don't need them much. But when it comes to something like this, I sorta wish she'd have paid a little closer attention.

    No, a new neuro is out of the question, as it happens, because of insurance. Any other neuro would be "out of network" and I'd be paying the full cost, I think. I'm not inclined to want to do that so long as this one is still prescribing as needed.

    She's part of a practice that includes 2 other neuros. They've been there for years and she's the newbie. I might be able to switch to one of the other two but my guess is that that would be strongly discouraged. I'd be told that Dr. X or Y isn't accepting new patients. Might be worth a try but it sounds like a good way to create lots of ill will.
    Last edited by agate; 06-03-2021, 08:38 AM.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

    Oh, Agate, what a rigmarole! I’ve had this kind of thing happen - usually when there’s a new MS fellow involved. I’m sorry this happened but I fear it’s very common for chronic disease patients on specialty meds.

    I applaud your perseverance.

    There comes a time when silence is betrayal.- MLK


      I checked on the practice and found that there's now only one other neuro there. He must be nearing retirement age and is rated only 3.5 stars out of 5 on There are some very appalling comments about him on that site but of course those can be from people with unreasonable grudges or other axes to grind. The doctor I'm seeing has only 3.2 stars. Still, she's nice and I think in general she's been trying to be accommodating, and she's certainly not a know-it-all.
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.


        So, Agate did you finally get your medicine today? That is so stressful. I have had times when my PCP or even my Neuro fails to call the pharmacy back to refill a rx. Then I have to call their office and often times I can't get anyone (actually most times). Then they say they will ask the Dr. to get the rx to the pharmacy, then it doesn't show up and on and on it goes. This usually happens with one or more of the pills I am taking, more than the Rebif. Hope this got straightened out without too much angst.


          How annoying! Sorry this happened as all that worry uses up energy.

          Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..


            Yes, the energy expended in the last couple of days! I did get the Copaxone/glatiramer acetate today but I was stewing about it this morning as well as I had no evidence whatever that it was going to make it into the hands of the shopper by noon, and when it did get here along with the groceries, I learned that there'd been a wait for it at the pharmacy.

            Virginia, I've learned to expect goofups with pills and I try to figure out ways of making sure I get enough of them in a timely way, but I was hoping that an injectable drug that costs as much as this one does wouldn't involve any problems.

            Wrong. The pharmacy's phone number wasn't even giving a busy signal today. They were so busy that Century Link came on the line to tell me the line was busy--and that for 75 cents I could be called back when the line was available. I opted not to do that.

            I believe the pharmacy is swamped just now because only recently that large department store chain (Fred Meyer/Kroger) has started offering COVID-19 vaccines. People are probably crowding in there to get their vaccines. Or to get their teenagers' vaccines.

            So I understand about the pharmacy. And I probably expected far too much of the neuro.

            However, the last session I had with her was a phone session, and that was when we discussed Copaxone, which she went ahead and prescribed. My guess is that phone sessions don't stick in doctors' memories quite as well as in-person visits, and that may be why she didn't seem to remember much. I would have thought she'd have kept a record though.
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.


              Agate, so glad it all worked out well. Sorry you used energy on this, when it could have been better spent somewhere else.


                It was probably very foolish of me to expect a specialist doctor to think about my rx refills when it was just a very ordinary drug for a very ordinary version of a very common neurological disorder. She's probably coping with disastrously ill patients most of the time--people with subdural hematomas and glioblastoma multiforme and other horrors.
                SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.