My last few days have been pretty full--on Tuesday I went to NYC to a trip to a new rheumatologist for a second opinion about whether or not I really have Ankylosing Spondylitis as I was recently told I do ...The trip went smoothly...I was being driven by a native of the City so had little to worry about in that regard; except that, as always, traffic backups could mean hours of delay, so we left plenty of time. And the trip went so smoothly that we were there 2 hours early! We had to spend that time sitting in the waiting room waiting, hoping to be taken early. The doc was backed up though, so instead of getting in before my appt.time it was more like 30 minutes AFTER...Let me tell you, my body was NOT happy with having sat for two and a half hours in the car and then those hours in the office! And then my appt ended up taking well over another hour; then the 4 hours back (yeah, we hit rush hour
). We stopped to eat so it broke up the time in the car anyway. My head felt like it was going to sink through my spine and end up somewhere in my chest! The pressure on my spine from being vertical for that long (11 hours total) was causing unbelievable pain.
The rheumy had to have been the nicest person I'd ever met! This man has been the top doctor on NY Magazine's list of top docs in NYC for three years running and he helped me get undressed and dressed...even put my socks on! Can you imagine?? (to get dressed at home I rely on devices like reachers and sock-put-ter-onners
) He spent a long time with me...looked over the reports and films I'd brought and gave me his verdict: I don't have AS; I have psoriatic spondrylopathy which is causing my spine to fuse...pretty much the same difference but follows a bit different pattern. And because it has been focused so much in my neck, (whereas AS begins at the bottom and works it's way up); it may be more dangerous more quickly...
He told me to seriously think about whether or not to bite the bullet -- and risk major infection and death, due to my propensity to get very severe infections already--and to go on Enbrel. (A biologic drug to treat RA and PA which works by destroying the immune system. Obviously this carries major risk) He said, really quietly, that if I don't get help soon, I will soon have a very, very poor quality of life.
Scary thought. It can get a lot worse than it is now??? (I really do know that it can, but honestly the thought frightens me to death.)
The doctor took a bunch of blood tests and I am to call him, probably at the end of today (Thursday) for the results. He DID already call me last night to alert me that my sodium is now 117 (low-normal begins at about 134-136). This is potentially a very serious problem which I need to address today with my local doctors.
The rheumy told me that he knows the trip is hard on me and that I don't have to go to see him again unless I want or need to...He said he will talk with me on the phone anytime I want - for me to call him and to keep in touch with him. What a LOVELY, lovely man! Just the fact that he accepts my insurance shows you that he isn't in this for the money--and that was confirmed by his willingness to remain accessible to me long distance.
So I am thinking about the choice in front of me. It's not an easy one; nor one with an obvious answer.