Remember the TV show House? Some medical mystery is presented... differential diagnoses are offered... treatments proposed and tried... nothing works... then, amazingly, Dr. Gregory House has some brainwave and YAY! Healing.
The morning I'm supposed to leave for a conference I wake up with a very, very sore throat, possibly strep (I work in a school, after all). My doctor takes a look, swabs my throat and comes back with "nope, you have mono". MONO??? Yes, the disease everyone else gets in junior high or high school, I've managed to get in my early 40s. Yes, I know who I was kissing. No, I still haven't forgiven OR forgotten. And, like chicken pox or other childhood diseases, getting it as an adult is worse.
The bloodwork continues to show an active disease for two years, only vanquished by Xanax, under the theory if we suppress the stress in my body maybe things could go back to normal. The problem is that I now have Epstein-Barr and will have it, along with flare-ups, for the rest of my life. I start to practice what's called ECAM, or Energy Conservation and Management.
My throat - again! - feels a little swollen, and during a routine visit to my endocrinologist she suggests I see my primary care doctor to get it treated. My doctor, like so many nowadays, doesn't really pay attention and the next six months are filled with tests and potential diagnoses and nothing really works. The swollen glands seem to disappear on their own, and my endocrinologist, at my next visit, thinks it was probably a run-of-the-mill infection that healed itself. My take-away? More ECAM and be very careful because this can - and has - happen again.
In early December I discovered there was something a little off with my left eye and made an appointment with an ophthalmologist. One examination later, I have a diagnosis: optic retinitis in my left eye. Now I need to see a neuro-ophthalmologist for treatment. Two days later, my eyes are being redialated and I'm doing a number of what I'll call "inner eye" exams. Yep, the optic nerve in my left eye is severely inflamed. Remedy? IV drop of steroids.
Just to rule out other problems, I'm tested for MS, NMO, lupus and Lyme disease. The problem with the first three is that they usually manifest in your 20s-40s, and I'm in my mid-50s. Surely there'd be at least one other symptom before now? Of course, there's the idiopathic form of OR and that's the one I probably have. One MRI and some blood tests later, they're all ruled out.
The steroids seem to work, and by March my eyesight is 20/40 (with glasses, I'm usually 20/15 and pre-treatment that eye was 20/400). Fun fact: in Massachusetts you can drive if you have 20/40 vision. Except things in my eye weren't blurry, they were foggy. No amount of corrective lenses would fix that and most of my sight is through my right eye, with peripheral help from my left (this is mostly affecting my central vision).
The six-month check up should be a breeze, right? Except... remember that episode of House? How the first treatment works, until it doesn't? That's me.
June arrives and my vision is 20/70. My doctor is - to put it mildly - concerned and surprised because that is not how this is supposed to work. She starts to talk about possible other causes, and mentions a word that I never thought I'd hear: sarcoidosis. Yep, the House crew's go-to "this is what we think it is although it's never been that before but one day it might be" differential diagnosis disease. I could have that. Only a CT scan can tell.
Annnnnd... no sarcoid (the 'in' term for sarcoidosis). CT is fine. So is a second MRI of my "orbitals" (which are eye sockets and let me tell you, when you see the results on the screen, you'll think you're related to Darth Vader!). Oh, and my first doctor is leaving so I need to see someone else. Soon.
This week was my fist appointment with the new doctor. We went over the progression of this problem and the previous testing, and then he tested my eyes. Yep. Worse. 20/100 in three weeks. As he put it, "you've lost several lines in a short time". Lines, I guess, being shorthand for "we're enlarging the lettering but if this were one of those large eye charts you'd be a few lines of text away from where you were three weeks ago". Obviously, a new differential diagnosis is required, along with new treatments and testing.
What's the differential? CRION (a chronic, remitting version of what I have). Syphallis (um, say what???). Rheumatoid arthritis. A few other relatively rare things I don't want to think about. But probably I'll be immunosuppressants for the rest of my life. Yay? Treatment right now is oral steroids, which could also lead to ulcers, bone density loss and the ever popular weight gain and 'roid rage.