Friday, December 09, 2005

Check Please!!

I'm so tired of bloodwork, scans, tests, pain, and just crap in general. It's beyond old at this point. Anyway- on to the medical stuff that I know everyone reads for.....

My 24 hour urine test (the one that tests for pheos) came back a little odd. Everything on it but the metanephrines were on the high end of normal and the norepinephrines were elevated at 524 (normal HIGH end is 480). So I don't know what that means except that we have to redo the test again to see what it says a second time. *sigh*

The CT Scan showed no tumor in my intestine. Of course, that is most likely because I didn't have the barium so even though it wipes me out for almost a week it looks like I'm going to have to do the barium so we can get a good look at the bugger. The scan did show a hepatic hemangioma which I guess I've had since at least May but no one bothered to tell me about. I got a little excited thinking that MAYBE this would be the answer to all my liver pain but Dr G says no so I still have no clue why every few months I feel like some witch is sticking her stilletto heel into my liver and twisting. :(

So I'm sure you've gotten the jist by now- EVERY stinking test I have done since I've been here has to be REDONE. :( We have to redo the intact PTH because after months of tests showing it being so high I'm not going to rely on one test saying it's not. We have to redo the 24 hour urine because of the results on that. We have to redo the CT Scan because it didn't pick up the tumor in my intestine. What next they redo the MEN2a test and show it was actually negative? Obviously that's not going to happen it's just getting so damn frustrating. Just when I think I know everything that's going on with my body I come here and they are telling me that everything is the exact opposite. It makes me want to run fast and far away from them.

Went to the general doctor today because the pain in my limbs is spreading and getting worse plus a bunch of other junk going on. So he said he still thinks the limb pain is neurological so we're sticking with me seeing the neurologist, the right flank pain I've been having for around eight months he feels is muscle spasms, and the getting sick all the time thing he isn't sure about. So he ordered a bunch more bloodwork to test for inflammation, arthritis, bacteria in my stomach, and orderd physical therapy for my flank pain problem. He also prescribed me something for chronic pain that is suppose to help me sleep (haven't slept much because of pain). He's also going to talk to insurance about covering the cost of my arm splints for the carpal tunnel problems.

So I'm not really much of anywhere right now. I'm also trying to get a different pediatric endocrinologist approved for the kids because the one that is on the insurance is proving incompetant already and we haven't even been given an appointment with the woman! If she really knew anything about MEN2a and my kids medical records she would know that they need to be seen soon and NO, February is not soon! >:(

I'll update again when I know something worthwhile.


Michael said...

Hey Jo,

I hear you loud and clear on the tests. I feel the same way. Sometimes I think that maybe I'd be just fine if I were left the hell alone by all the doctors and specialists.

Hang in there, as I'm sure you will.


W said...

Hello Jo,
you're in my thoughts daily. Through your Blog I have found "Michael's" blog and I his words are so calming and serene. I think the answer to your being able to cope with so many dreadful ordeals is to try to find that quiet place in your head or heart. For me in the situation I related to you by email its in my Christian faith, for Michael its the serenity he finds in Zen and Buddhism - I hope you'll find that place where sanity and peace reign!
Am thinking of you.

Jo said...

Thank you both. I've actually found that what keeps me centered and reminds me it's all okay is comments on this blog by people like you. I read the comments, remember that I'm not alone and others know the frustration and I'm able to take a deep breath and pick back up. I think it's just been such a whirlwind year (and we've only been dealing with all of this a year so far) with everything hitting so fast and hard that half the time I don't know whether my head or my bottom is pointing up. LOL.

Thanks for the comments, they mean alot to me and yes, I'll definately hang in there. Heck, if we don't teach these doctors something then who will? ;)


W said...

Dear Jo,
Am still with you on your journey.
W - Australia