Thanks Sue. I don't think my doctors are on top of it - they just seem to pass me on to someone else because my symptoms and my "numbers" don't fall squarely into one nice little diagnosis category. Some just tell me flat out that it's all in my head - during an acute episode right after xmas, the on call doc told me just to "ignore my symptoms and get on with life". Each specialist I see seems to be competent in their area, but useless in others, and they never take ALL my symptoms into consideration. Ie my hematologist swears that NOTHING causes eye pain, so he rolls his eyes when I say that I have bouts of severe eye pain. No joke. (Hand me your pencil, I'll show you what eye pain is buddy...) Glen told him to google eye pain, that was pretty funny. This is exactly why I always bring someone to all my appointments - there's always something so ridiculous that I'm sure no one would believe me on, so I need to have a witness. My GP still has me "undiagnosed" from AS - he won't believe a word of what my rheumatologist says, and keeps telling me that taking enbrel is useless (he's kind of got a point on the enbrel thing, but not that way - I'm on double doses of enbrel right now just because it's losing its efficacy). My neurologist keeps confusing my test results and has no idea how to interpret the results he does have (PBG is not the same as PBG deaminase, duh). Most of my doctors say it's not porphyria because I don't have severe abdominal pain with my attacks - but then I explain that my neuropathic pain is so much worse, with the amount of morphine I need to take the edge of that, the abdominal pain is quite under control. They just don't understand that. When I saw my rheumatologist in Dec, I was on whopping huge doses of morphine, so when he did my exam, none of the usual tender spots were tender, so he decided that my fibro/AS are in remission - I had to explain about the 60mg of morphine I was on, and he told me even the highest doses of morphine won't do a thing for inflammatory arthritis pain. Trust me, when the morphine wears off, my SI and feet are very unhappy. The waitlists here are just stupid long to see the new docs I've been referred to... but I'm still looking for answers as to why my legs get so weak they just give out sometimes.
Sorry for all the whinging. I'm hoping someone will figure this out, and I hope there's a treatment, but at the same time, I'm trying to get myself used to a new normal... hope that makes sense. Glen thinks that trying to cope with the way I am now is a sign that I've "given up the fight", but I haven't really... I guess I'm more like a "prepare for the worst, hope for the best" kind of person. Glen usually is super optimistic and denies that this could be a chronic condition, so I think when at the last apt, he heard two docs tell me to just get used to it, it hit him pretty hard. Hopefully he'll come around. I'll deal with the relationship issues later.
Right now I'm just so thankful that my dad seems to be doing ok. He's still in ICU, but my eye pain, fatigue, and nausea are too bad to get on a plane to get home to see him. Wow, I need a vacation from my own body for awhile.
I wish I could meet Mookie one day - he sounds like a real character. You should really post a video of him doing some of his crazy things. smile