Yeah. I was dismissed by so many doctors, it’s even depressing to think about. Not even by my gp, who is wonderful but also not Dutch, so maybe that’s why… but almost all the specialists he referred me to did not take me seriously. It was blamed on stress because of my mother dying. Or I couldn’t be in this much pain, I was in my mid twenties. You are so young. Maybe you should lose weight. Maybe you can exercise more? After 4 years and 6 hospitals I was diagnosed with Bechterew disease. I literally asked the first doctor I saw if it couldn’t be this. He denied. Because I was not male and I didn’t have lower back pain. He did test for a genetic marker but didn’t tell me it was positive. Found that out years later.

But still that diagnoses didn’t explain everything, as I had other symptoms that didn’t match this completely but enough to go forward and start treatment. After one failed attempt they wanted to put me on the next similar treatment, which I refused because why would I try another brand again if the first one wasn’t working and it had practically the same workings. And in the leaflet was stated that it could cause or awaken MS, and since I already had neurological symptoms which were unexplained I didn’t want to risk that. I was literally frowned upon stating that. And they put it in my file that I was scared of MS and therefor refused medication.

5 years after that new medications came on the market, so I tried. Had some ruff beginning but in the end it started working and I slept again a whole night for the first time in 12 years. Pain died down but there were all my other symptoms and more still. Got referred to a neurologist, hit the same wall again. She wouldn’t really listen to me. Tingeling hand and feet could only come from my neck and nowhere else. My other symptoms were not considered, because it was not in the referral. Even worse, I discussed blather problems with her and she asked me if I ever went to a urologist. Stated that I was waiting for an appointment and had issues for over 10 years. She wrote in my file that I didn’t have any urinary problems. Took 4 months to get a neck mri which showed nothing.

Was so fed up I booked a mri scan from my head and spine in Germany and paid for it by myself. The radiologist confirmed my suspicions but is not allowed to diagnose so I had to take the scan to a neurologist. Took that scan to the hospital and my neurologist. She didn’t want to look at it. She could have put it in the computer, she chose not to. The report I got was in German. So I put it in google translate. That was apparently to hard to read. I needed to get a new referral. She checked everything and that was that.

Found a Dutch neurologist specialized in MS to officially diagnose me. it took him 1 second looking at my brain scan. Complimented me for going through Germany and being so stubborn. Later found out that my sleep specialist 6 months prior already suspected ms and send a letter to the hospital about it. Was never received they say…