Nearly a month has already passed since my last check-up appointment with my neurologist, Dr.K, and I thought it was high time that I write up a summary of the event before memories completely dissipate.
I started the appointment off to a good start by bringing my favorite doc a bag of bling. She has this keen interest in astronomy, so I brought her a space-themed calendar (produced for free public distribution by the agency for which I work) and some cool stickers for her two kids. We spent the first 5 minutes going through the calendar and talking about science — ha!!
Following the conclusion of the astronomy mini-lecture, the medical check-up was largely uneventful. At the time of the appointment, my arm/hand had not yet started feeling this strange combination of numbness and pain, so we didn’t discuss any symptom of new concern. I mentioned my continuing concern for my eyes (I haven’t posted the latest RNFL thickness measurement yet, but the trend is not good … the RNFL definitely appear to be thinning at a much higher than normal rate). She asked about fatigue, and I indicated that fatigue was still a huge issue for me, almost debilitating at times.
This visit resulted in 3 “action items” (as we would refer to them at work):
- referral to see a neuro-opthomologist at UCSF (San Francisco)
- take another MRI
- referral for a sleep-study test
Yep, if you got a bit of deja vu when you read #3, you should have! I just had a sleep study test done about a year ago, and it was awful! And the conclusion was that nothing was wrong with my sleep. Which leads me to ask: why do yet another test? It seemed that my mention of fatigue is what motivated her to suggest another study … but isn’t fatigue a hallmark symptom of MS? Why pursue this alternative explanation? And what more can be learned? Here’s where things got awkward: I didn’t want to challenge her authority, but ordering another sleep test seemed so utterly … silly and wasteful to me.
With regards to #1? I am grateful for an opportunity to speak to another expert about my eye situation, and UCSF has a reputation for being among the best in the field of neuro-opthomology. And #2 appears to be entirely appropriate … I haven’t had an MRI since October 2012, and therefore not since I’ve started on Copaxone, so seeing if the lesions have increased in number, shrunk in size, etc will be of interest.
Back to the title of this post: I have no idea! For now, just letting the phone go to voice mail when the sleep study clinic calls to set up an appointment is working, but I don’t recommend this strategy as a long-term solution!