Ok hon,
Putting this in hard type so you can keep reminding yourself.
Your immune system is being a difficult child. Being a really out of control difficult child. And when our difficult children completely flip beyond all reason, we no longer worry about next year/week, tomorrow, tonight, dinner, lunch, clothes, or even necessarily our own sanity. We grit our teeth and take it 1 minute at a time.
It's time to take it 1 minute at a time.
While you may be one of the most geriatric patients (oh, stop... you know I love ya!) ever diagnosed with Susac, and while it is a very rare immunoblurp, there are some serious pluses here in my humble opinion. When it was "just" arteritis/vasculitis/meningitis/ shingles/elevated SED rate/pain/etc. Mayo wouldn't seen you - too boring. Now that you're "rare", Mayo will. And I'd bet my bottom dollar that you'll be seen by some guy with a lousy bedside manner but with more brain cells than several of us combined who is just itching to write an article for JAMC about how he cured or at least very successfully treated Susac's. He's not going to be in it for patient care so much, he's (or she) is going to be in it for the intellectual challenge of beating the disease. And I think this is very very good for you. I think you *want* a real brainiac working on this.
And really, that self-limiting thing is pretty doggone great news.
And of the triad of symptoms (hearing, vision, and neuro stuff), none of them in and of themselves are terribly rare - it's just the collection of them together, concurrently, in a patient. In what I've read, none of them really interact with or affect each other. It's like having hives and nasal drip and ingrown toenails all at one time, and having it called Fred's syndrome. And yeah, there can be some nasty side effects from Susac but.... notta doggone thing you can do about it. It's either going to happen or not. I've always hated those statistics they quote you: "You have a 20% chance of turning green." At the end of the day, it's either 100% chance or 0% chance, unless they mean to say that 20% *of* you is going to turn green, which of course is not what they mean. A bit of a fatalistic take on this is called for. What will be, will be. (Definitely *not* time to be like Sue - no zebras, okay??)
You are more than justifiably bone weary. You've been doing this in an acute phase for 5 doggone months. You haven't slept worth a darn (except for, apparently, Friday night :wink: ). You are still being hit with demands from your (dare I say it) at times stress-inducing kidlets. The docs have been, thus far, doing things that haven't been working and this is the *first* time in 5 months that they seem to be acknowledging that. You've been on enough drugs to tumble a rhino and you're still standing (kinda :wink: ). You've been in a state of suspended animation, my friend.
Fear is absolutely the emotion of the moment. But only for the moment. Don't let it paralyze you. I know it's very easy to say, not having been through the medical mill that you have.
