To tell or not to tell, that is the question

Well, all of the results from the blood tests are in, much faster than I had expected. Below is the verdict:

  • NMO (neuromyelitis optica) — negative!  What a tremendous relief.
  • “sticky blood syndrome” — negative.   Odd to be disappointed in a negative result, but I had convinced myself that this condition is what I had, that it explained ALL of the symptoms that I’ve experienced since childhood (including the migraines with aura). You see, unlike MS, this syndrome is easy to treat:  aspirin and/or blood-thinners.   I was so sure this test was the one that was going to come back positive. I do find myself wondering about the probability of false-negative  results.

The neuro-0pthomologist visit was extremely disappointing, and generally a waste of several hours of my time.  The doctor seems to be more interested in doing referrals to other specialists (sleep specialists, uveitis opthomologists, and rheumatologists) than in providing professional answers to my simple questions.

The lady has presumably monitored/studied the eyes of hundreds of MS patients, yet she acted more like a floundering graduate student in the middle of a dissertation defense than a well-respected professional in her field when I asked her the following questions:

1) My question: How do the thicknesses of my Retinal Nerve Fiber Layers (RNFL) compare to those of other MS patients?  Are mine significantly lower than what you typically see, or are they typical values? Her answer:  Good question, we don’t really know. Every one is different, with different thicknesses. (Note: wow,  way to provide a non-answer. Is this lady a physician or a politician?!)

2) My question: What is the RNFL thickness that, below which, one’s vision becomes obviously impaired? Her answer:  Really good question, I don’t know that we can really say.  Your vision doesn’t seem to show much issue.   (Note: when I pressed her on an answer, she finally said that my right eye is “already there” in terms of the threshold value.)

3) My question: Is my RNFL thickness likely to diminish further with time, or does it typically stabilize when as thin as mine?  Her answer:  I don’t have a crystal ball.  (Note: really, lady, that’s the best you have to offer?!  I can tell you what our Sun is going to do, 5 freaking billion years from now (refer to previous post), and based on your experience with patients like me, you have nothing to say from a statistical point of view that would shed some light regarding what the typically progression of this condition is?)

The final kicker this week: my insurance is playing the “non-committal” game regarding its coverage of my neuropsychology/cognitive exam, so I cancelled the appointment (with hopes of eventually rescheduling an insurance-covered exam in the near future).

At the end of the day,  the only diagnosis left standing, via process of simple elimination, is MS.   But is it really MS?  Should I stop taking Copaxone until I have my follow-up meeting with Dr. H (MS specialist) in which we will review all that we’ve learned from the blood tests and her review of my MRIs?   Every single injection site, since Day 1, is still noticeable (it is either swollen, discolored, has a hard lump under the skin, or feels hot to the touch) — without knowing what Dr. H’s final assessment is going to be, I am really starting to doubt if the benefits of the “treatment” outweigh the negatives.  At the very least, I am going to quickly start running out of viable injection sites.

And finally … my parents and extended family.  What on earth do I tell them, if anything?  If I continue with the Copaxone treatment over the holiday, while I am visiting them, I will be forced to disclose at least today’s flavor of my diagnosis (alternatively, I could just be quiet about the whole thing and instead let them wonder why I am sneaking syringes to my room).  Would it be best to stop treatment, enjoy the holidays, and wait until the follow-up appointment before talking to my parents, who already worry incessantly over me?  Or are my eyes so close to the hairy edge of blindness that I should be busting my chops (or poking said chops with a needle, as it were) to insure that I am doing all that I can to protect myself from additional damage?   I feel like a harmonic oscillator: one moment, I’m leaning in one direction and in the next moment, I’ve quickly argued myself into the opposing viewpoint.

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