How many specialists does it take to …

… make a diagnosis?   (My title here was a weak attempt at humor, making a play on the “How many PhD’s does it take to change a lightbulb” joke.  Yeah, I know, don’t quit my day job to become a comedian just yet).

In the past 2 weeks, I will have or will soon be seeing no less than 4 specialists related to the field of neurology, in addition to my “primary” neurologist.  I never imagined that there could be so many specializations in the field of neurology.  And an even more surprising fact:  women seem to be dominating this field.  Every single person I have seen so far is female.  Yep, we’re going to take over the world someday, and the world will be a better place for it!

These appointments are as follows:

1) neurosurgeon: In addition to showing 3-4 lesions, a few of which had something resembling “Dawson’s fingers” morphology (a feature that allegedly is distinctly indicative of MS), my 2012 MRI showed a somewhat large pineal cyst (the diameter is about 1.3 cm). This cyst had been noted in previous MRIs, but my neurologist, being the thorough person she is, wanted to insure that the cyst was not causing any trouble, and referred me to the neurosurgeon.  I had that appointment last week, and the doc assured me that the cyst is not causing a problem, and will likely never cause a problem.  She explained that the pineal gland, located at the base of the brain, is precariously close to some “channels” in the brain through which the brain fluid moves from one area to another, and then out down the spine.  A cyst around this gland can press on the channel, to the point of pinching it off, leaving the fluid nowhere to go, and then (and I swear this is exactly how the good doc put it) “your head explodes!”   Thankfully, my MRI shows no indication of hydrocephalus (“water on the brain”, this condition that I just described), so I’m fine. She recommended getting an MRI every 5 years or so, to keep an eye on it and insure there is no further growth.  Spectacular!  That’s one item checked off on the “no problem” list.

2) MS specialist:  I just saw a neurologist who does active MS research.  I thoroughly explained the results of that appointment in my previous post, so all that I will say here is:  if you have or suspect that you have MS, find an MS research clinic and get a second opinion.  I found this doctor to be incredibly informative and current on recent developments in this area.

3) neuro-opthomologist:  Because of the considerable damage to the RNFL in both of my eyes, I am seeing this doctor to get a complete picture of what my current vision capabilities and deficits are.  I have this appointment later this week.  I am a bit nervous about how well I will do on his exams … I am definitely not prepared to hear that I’ve already got serious visual impairment as a result of the thin RNFL, but I fully appreciate that such is a possibility.  What surprises me, to be quite frank, is how well I am able to see, given the extremely thin nerve fiber layers in my eyes, particularly in my right eye.  I’ve read a couple of medical papers  that imply visual impairment begins at around an average RNFL thickness of 70 microns.  To quote one study, “… the mean RNFL thickness tipping point for visual field loss was 75.3 µm” (http://www.healio.com/ophthalmology/glaucoma/news/print/ocular-surgery-news-europe-edition/%7B466732ee-df73-4118-9bb9-b2dc605163d7%7D/rnfl-thickness-threshold-linked-to-visual-function-loss-in-open-angle-glaucoma).  Both of my eyes have thicknesses under that value (58 and 70 microns in the right and left eye, resp).

4) neuropsychologist:  My appointment is on Friday.  Explanation:  I have had a real problem with memory, specifically with word-recall, for some time.  This problem does seem to be increasing with time.  What haunts me is the concern that I have something like Early Onset Alzheimer’s.  I will be taking a rather intense battery of tests on Friday, that tests different aspects of cognition, to determine if there are cognitive issues, and if so, what their underlying source appears to be.  Apparently the different tests can isolate different neural pathways and identify problems associated with them.  I just hope I don’t “fail” the IQ test!   I wonder if there are practice exam booklets I could use to prepare myself,  like what we’d do for SAT and GRE exams?!!

I am very much hoping that I will have a better “story” by the end of this coming week, as I am about to visit my family for the holiday in Ohio, and I have not mentioned any of my last 2-months of medically-related activities to them. I don’t want to tell them “MS”, if in fact the case is actually a much more benign “sticky blood syndrome” or other readily treatable condition.  And I don’t want to say “MS”, if the situation ends up being a more serious (from the standpoint of the long term prognosis of my vision)  “NMO” diagnosis … or, god forbid, I really am starting to experience early-onset Alzheimer’s (which apparently also can cause thinning of the RNFL, according to some medical journals I’ve read).  Just as I work really hard in my professional life to publish scientific results that are as accurate as I can make them, I want to deliver accurate news to my family.

I am grateful that my primary neurologist is dedicated to getting answers to questions, and looking holistically at a person rather than just focusing on one aspect and potentially missing an important clue elsewhere.  No matter what the outcome of both these specialist follow-up exams and the APS and NMO blood tests that I am not-so-patiently waiting for the reports on, at least I will finally have answers.  While ignorance may be bliss, knowledge is power.

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