About 2 weeks ago, I had a follow-up neurologist appointment. Below is an outbrief of that meeting, with the usual provision of questions asked and answers given during the appointment. At the risk of being annoyingly repetitive, please allow me to say once again how much I love my neurologist. For most of my life, I’ve had the worst possible luck in finding competent, caring doctors. (One of my future posts, on a day that I have absolutely nothing else to talk about, is going to be a humorous account of some of my worst-doctor experiences — I’m sure that many of you will be able to relate!) Dr. K. broke my bad-luck streak by being the best doctor on the planet, as far as I am concerned.
OK, enough Dr. K. worship … on to the meeting outbrief: The primary focus of the meeting was to discuss the results from tests that I had taken since my last meeting with her in January. The tests were the sleep-test and neuro-cognition evaluation. Incredulously, she had received neither of the test results from the medical institutions that had performed them, and so our discussion took an alternative direction: I had brought in about 3-4 questions to discuss. The following is what I asked her (her answers are indicated in blue font – note that they are not precise quotes)
1) My question: How do you know for sure that I have relapsing-remitting MS rather than a progressive form, given that I don’t really seem to have evident relapses? Can one make a definitive distinction between these two forms? (note to the reader: my neurologist never previously gave my MS diagnosis a label … my question was, in some sense, a backhanded way of forcing her to provide a label. The reason? There is a big difference in the long term prognosis of RRMS (relapsing/remitting) versus Progressive MS. Bluntly put, RRMS is the less-scary form of MS that has more treatment options. The fact that Dr. K. had prescribed Copaxone to me was an indirect way of saying that she considered me to have RRMS, but I wanted to hear it straight from her mouth).
Doctor response: She gave some overview regarding the differences between the two types of MS. She then stated: Progressive MS is typically identified by the appearance of a lot of “black holes” and brain atrophy in MRIs. Your MRI report does not mention any brain atrophy or presence of black holes. But even so, your MS being progressive versus relapsing/remitting wouldn’t change my opinion of your taking Copaxone, as there is some evidence that progressive MS patients still get some benefit from Copaxone at no risk of the drug causing any harm.
2) My question: Well, speaking of brain atrophy, I know that the MRI report does not mention that there is any atrophy, but when you look at my MRIs, so you personally see any evidence of atrophy in comparing MRIs taken in 2012 with the ones from 2006?
Doctor response: She briefly brought up my MRIs on her computer, and then stated: What I am going to do is put in an order to have your 2006 and 2012 MRIs compared by an imaging technician, explicitly to address this question of atrophy. I should have the results by our next follow-up, and we go over them at that time.
3) My question: And speaking of black holes — when I looked at my MRIs, I think I found one that was never mentioned in the report. Is this (I showed her this picture) an example of a black hole?
Doctor response: Yes, this looks like a black hole, but not a “bad” one — it isn’t as dark on the MRI as black holes can get. The darker the spot, the more atrophy in that area, and the more serious the associated disability. (She then brought up a powerpoint presentation given at a medical conference that showed an excellent example of black holes in a brain MRI (sagittal view) that demonstrated the connection between the darkness of a black hole and the amount of associated axon loss. She gave me the name of the author of the presentation so that I could look it up later, but damn if I didn’t forget the name.)
4) My question: I am still concerned about the long-term health of my eyes. I don’t feel as if I have a good go-forward plan regarding completely ruling out some other underlying condition (like nocturnal IOP spikes at night, normal-tension glaucoma), and/or a good monitoring plan. I need a good opthomologist, do you have any recommendations? Or should I give the neuro-opthomologist that I saw last November another chance, even though I was not at all impressed with her?
Doctor response: No, you should not go back to someone whose competence or concern you question. I will do some research and identify another ophthalmologist from a reputable institution that should be able to address your concerns and provide a good level of monitoring of your condition. (She promised to get back to me with a reference so that I could set up an appointment).
5) My question: For those days that I have bone-crushing fatigue … am I doing myself further damage to “push through” it and proceed with my normal day activities, including exercise?
Doctor response: There is no evidence that exercise, etc will cause further neurological damage. In fact, exercise has been shown to have some benefit to cognitive function. Just make sure you do listen to your body, though, and don’t overdo it.
6) My question: What about medication for my cognitive problems — there are days at work that I don’t know how I am going to get through them, because I can’t seem to formulate a coherent thought or sentence? Would taking something like what is prescribed for Alzheimer’s patients be of any benefit?
Doctor response: (And this was news to me, esp. since I know of other MS patients who are on Alzheimer’s-related medication to improve cognitive function) Research has shown that traditional Alzheimer’s-related medication is ineffective in addressing cognitive decline caused by MS. The underlying mechanisms for the disability between these two conditions is fundamentally different, so what helps one does not help the other because it is not addressing the root-cause. (She explained a bit more about what the differences were, but I got a bit lost in the terminology). Let’s wait for the neuro-cognitive evaluation report, verify that you really do have cognitive problems, and go from there. There is a drug (she gave its name, I’ve forgotten what she said) that may help, if you really do have MS-related cognition deficiencies. Let’s talk more about this, at your next appointment.
In summary, there’s plenty more ground to cover in my follow-up neurologist appointment in July, but only if only those neuro-cognition evaluation results decide to show up.