My story:
I grew up in Russia, where public health
was free (I don't know about now).
Since I was a kid, I always felt tired and had headaches. My pediatrician always wrote it off as flu. A few years later a new head doctor arrived at our hospital and (I guess) reviewed my records. I did some tests and he sent me to a specialized kids hospital for urological deceases. My age was 12. I spent a couple months there doing all kinds of tests. All my urine was collected, and I even had to wake up at night to fill bottles. I had to drink a LOT of mineral water too. They fed me antibiotics, vitamins E, A (i think) and B6.
After that they transferred me to a "low security prison" - a boarding school for recovering kids where I was on a strict diet for 3-4 months. After they let me out, the doctor gave me a list of things I shouldn't eat (like chocolate!), some vitamins and advice how to live with healthily my condition from now on. (mind you - all treatment was free)
My mom took me to many more doctors to make sure I'm not sick anymore and from then on I ate very bland food and with grandma they prepared herbal drinks that would improve my health.
Fast forward 5 years.
My family moved to America. After a while I forgot all about my kidneys. My whole family had to work very hard and didn't have time to worry about health. I started eating "whatever." After a while I started having old symptoms, as well as some strange new ones. Besides headaches, at the end of my stream (****) came out some white stuff. And it was stinging and burning my penis. My tongue became grazed and painful, with white film. Also, from getting white discharge often (as I think) there appeared a cyst on the base of my penis (on urethra). It also because difficult to breathe, I started sighing from now and then. This may be unrelated, but at about the same time my skin felt like it had an allergic reaction. It was like when you have herpes come out on lips, but it was on random spots all over my body. With tiny bubbles under the skin, which would appear in random places.
When I just started having these symptoms, I went to a doctor, who thought I had an STD. I said I never had sex, so he asked me if I was molested :S In two weeks that doctor retired. I got some hyper Indian doctor who said my ears were clogged and that I had to clean them. He was surprised how I could even hear anything. All my complaints went unnoticed (besides, he spoke very bad English).
Then I went to another doctor, an older American guy. I came to see him with a written list of my symptoms, headed by the name of my condition OXALURIA (he never heard of it). He listened patiently, then sent me to take some tests - blood, urine and MRI. He said everything was clean and that I shoudln't worry about nothing. In fact, he sat down in front of me and said: "Listen, you're a young healthy guy. Nothing is wrong with you." I wanted to say "Doctor, but look! I have no head and my guts are hanging out!" He said ok ok, try these drugs (he gave me some sample drugs) because he thought my tongue was grazed because I had acid reflux. The drugs did nothing and I demanded he do something to help me. He sent me a urologist, who said the same thing, that everything is clean and that my kidneys are perfect.
I was amazed. No help, no respect and these guys took what, $200 a piece per visit? WHAT? American health system is a robbery that needs a public rebellion to destroy it. But ok, I guess everywhere is like this nowdays, not only America.
Anyway. Right now I'm searching for information about my disease. Are there any updated treatments besides the diets? Maybe some better diets were discovered since I had oxaluria as a kid (10+ years)?
Thanks for reading. I know it's long.
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