Saturday, April 7, 2012

#HAWMC - Writer's choice! - Seattle trip update

I met with my new/old neuroendocrinologist, Dr. Broyles, yesterday in her downtown office. New, because I'm establishing care with her as a new patient. Old, because I was her patient from 2005 to 2008. It was wonderful. She even reminded me that one of my MRIs had shown inflammation in my pituitary stalk, and that this was further evidence of my diagnosis of Autoimmune Hypophysitis (lymphocytic hypophysitis). She hadn't heard of the studies about the cure that I was talking about, but she was excited and was going to read up on it. She also had a drug she was working with, that they don't even have studies out for yet! This trip was well worth it!

She took one look at my results from Colorado University, and was appalled: "And they tried to tell you this was a normal response?" She even had a follow up question: "Do you know what the strength of the injection was? Were they using..." and then it turned into scientific jargon I don't remember. But Colorado University didn't even mention there were two possible injection types. You'd think if they wanted to prove all my previous doctors were quacks, they'd at least cover their behinds. I'm going to have a long conversation with their hospital administration when I get home.

So the plan is, she's going to look over the studies, pull up all my old information (some of which is in archive) and give my case a good, thorough looking-at. She's going to contact the folks who ran the studies to see what levels of the medications they used, and see if it's a protocol we want to try. We both know that the protocol is really risky---we'd basically be pushing my immune system as close to off as we can get it for 16 weeks. That's a big deal. It will be like when cancer patients can't be around anyone so they don't catch accidently catch a cold and die. I will have to be super, super careful. And high-dose steroids means around 100mg/day. YUCK! I will be starving all the time, my skin will hate me, and oh, my poor emotions! It will be hell.

But if the studies hold out... if this shows that it really can reset my body and eliminate all traces of the disease... Sixteen weeks is nothing. It takes forty weeks to make a baby. I will do what needs to be done. She took a bit of blood to see where my renin levels are at, check my thyroid and other basic things. Things move forward from here.

Oh! So exciting!!!

[Other posts on my Seattle Trip]

[The back-story in chronological order:]
Trying to get an appointment in Denver
My discovery of the paper on the possible cure
Got an appointment!
CU Neuroendocrinologist not looking so good
Looking worse now...
And still worse...
But wait? A glimmer of hope?
Nope... no such luck...
Maybe if I switch doctors in-house? No....

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