Hey there! I had a lot of really nice replies on my earlier post on this website. Thank you so much for helping me!!! I feel supported, something you really miss when you're sick and you can't get a diagnosis.
My doctor is sending me to a clinic with the specialism to diagnose auto-immune diseases like behcet's. He also thinks I could have behcet's. The waiting list is very short there, thank god, so I'll be able to visit within one week I hope (well, that's what the website says).
I'm very nervous for my visit (Again!!!). I pretty much have been nervous for four years now. All the appointments, different doctors, tests, results... I hope this will be my last stop with a nice ending. Nice ending for me means knowing what's wrong with me!! I've already gotten over the idea that I have a chronic disease. I am really interested in having contact with people with the same health problems. How do you handle it? What was/is your struggle? What's your story?
I'm also planning on (if they find out what's wrong with me, and if it's behcet's) participating in scientific research. Anyone did this before?
and------------ writing (a book maybe) about the failing health system, to help and diagnose people who have rare diseases. The truth is that I found this disease myself on the internet, because my doctors didn't have any ideas left. And that's what happens to a lot of patients! Have a story? Share it with me plz. Doesn't really matter what country you're from.
Sending strength, positive vibes and hugs from Holland, xoxo Lieke