We ended up deciding for now to go the anti nausea medication route to keep her in school. Really did not want to add yet another medication. She takes so many, but for now it’s the option that works until we can work out which illness is causing the tummy issues and if we can possible correct it vs medicating it. It’s like every time we think finally we can begin to move forward yet something else says “oh no you don’t”.
I have no clue if there is a Mast Cell educated Doctor here in the Portand Oregon area and the idea of yet another possible DX is daunting. We are still awaiting word on the MRI DX and geez she has so many others already. I’ve kind of reached the point of just not knowing where to go from here. She is having to switch some of her Doctors due to an insurance change and I find it rather scary. We do get to keep her POTS Doc and I am hoping her Geneticist as well. But finding a PCP who knows EDS/POTS etc is still not working out.
Whatever works, my friend! I NEVER found a PCP (or any other doctor, for that matter!) who “knew” EDS/dysautonomia. My best advice there is to try to find someone who is open minded, preferably not brittle and burned out, and you likely have a winner! I just learned today that one doctor is using my book to TEACH HIS MEDICAL STUDENTS. Whoa!Another patient, whose doctor was completely shut off to considering hydrocephalus, went to another who said that we were SPOT ON. She was having “pulsatile vision”. He confirmed that her vision changed with her pulse, and told her that doctors who are also patients are often times the ones to listen to because they LIVE these symptoms. Oh, and a doctor who hasn’t forgotten what all medical students know would be great — the more we learn about the body, the more we realize how much we DON’T know… 🙂 Hang in, my friend. And let’s all try to keep up on the “good doctors” page… 🙂 Diana