Had my appointment today at the hospital to discuss my treatment and possible new leads.
Didn't learn much new today. While the hormone treatment has clearly had a minor impact on improving my condition, if the hormone deficiencies were the big problem my condition should have improved very significantly from the treatment.
The deficiencies have some degree of effect on my symptoms but they're not the cause of said symptoms. The cyst on my pituitary gland isn't big enough to mess with my hormones according to the doctors so the only other reason they can think of is my opioid painkillers causing hormonal deficiencies. Unfortunately I can't quit my painkillers because they were prescribed for unbearable chronic pain in the first place.
In terms of new leads there aren't any, the specialists have never seen anything like my case and are still puzzled by the symptoms and test results. X normally doesn't occur at the same time with Y, X points towards this kind of disorder, Y points towards another, ...
They're even considering the idea I might have two rare diseases.
It's not that the specialists working on my case are incompetent or anything, I should be glad this special unit decided to take my case in the first place. But for now they're a bit out of ideas and will be consulting with specialists from other hospitals/countries while my full DNA examination is still underway. My next appointment is somewhere in August now. For the next few months I just need to continue the hormone treatment, call them if I experience any abnormalities and send in a urine sample if I notice brand new stretch marks.
I'm blessed to never get bored at home and I'm generally in a good mood so that helps too. After 3 years of no diagnosis I'm quite accustomed to waiting for new developments in my case.
At least this special unit has made progress from day 1 of meeting them last October, unlike all the other more local specialists who kept finding zero evidence of anything being wrong with me in the first year or 2.
Hopefully that thorough examination of my entire DNA produces some results because all the other specialists are stuck at the moment and if nothing shows on that test I'm not sure how things will proceed.
