What about the AQP4 antibody? Just another twist in this sordid tale to diagnosis...

[DRunnerchick]

Welcome friends to the latest episode of "As the Stomach Turns".

I've been to see Dr. P, my #1 sleuth and he surprised me with a rare disease and I am firmly planted in zebra territory now! I don't know whether to say, "I told you so" or cry for good measure. (I think I'll keep my stiff upper lip for now since I can't feel it anyway.) This was my return visit after seeing the infectious disease specialist regarding my "unusual" Epstein Barr virus results. The results of the PCR test were negative so that means the EBV titer was a false positive ( i.e. cross reactive from something else). ID doc said, 1) not infectious, 2) likely rheum/AI 3) False positive EBV for current infection but IgG is high.

Enter the latest theory for Dr. Sleuth to test: NMO+SLE. As you all know, when you get an autoimmune, they bring friends. NMO (neuromyelitis optica) has many symptoms in common with NPSLE and is an AID, but is demyelinating and can cause blindness and paralysis. The good news is that if the AQP4 is positive as well as the spinal MRI, they can diagnose immediately. NMO is treated more aggressively and with many of the same drugs (cellcept/mm, azathioprine, rituximab). But, if you have an acute attack it requires 5 days of MP I.V. or plasmapheresis.

I'm just feeling a bit out of sorts. I was house/dog sitting last week and it was more than I should have done by a long shot. My daughter is still in the boot with a broken foot, now with more complications. I'm overly fatigued, feel a flare (of which one, only heaven knows) coming on and I'm in a bit of a funk. Of course, when I was in Dr. Sleuth's office yesterday, the new MA did the mini depression screen and I could have gone one way or the other, but between the lack of sleep last week that is quickly catching up on me and the new developments, I may as well have a rain cloud over my head. I was trying to get myself back in order so I could start running again by May 1--nothing grandiose, just something! I've been a runner for 40 years and haven't run since my last fall in October. It's my first love and had such high hopes and now this balderdash! Arghhh!

Have any of you had any experience with the AQP4 (NMO-IgG) antibody or NMO with or without lupus? Thanks for letting me bend your ear.

DRunnerchick

P.S. I forgot to add that sometimes people with SLE and pSS test positive for the AQP4 ab even when NMO isn't present but since it is a relatively new test and not widely available, it is unknown what the relevance is.