Advocating for My Health: How Do I Get Doctors to Take Me Seriously?

I have a similar condition. I have a cavernoma in my hypothalamus, very close to my pituitary gland and I’ve also been gaining weight recently. I’m sorry that your doctors aren’t listening to you. The best suggestion I have is to find different ones. Some doctors believe they know everything and refuse acknowledge all the unknowns when it comes to rare conditions. If they dismiss your concerns then they’re not the right doctors for you.

I have even tracked the seizures and severity to be focal to bilateral tonic-clinic seizures at their most severe and aware focal emotional or partial-aware hyperkinetic in less severe states. The seizure type is typical of cerebral AVM from the peer-reviewed science I’ve read (I have a Bachelor’s degree in Biology) My grandfather died of pulmonary fibrosis and my daughter was born with a congenital abnormality of the tricuspid valve. This suggests a possible genetic link to valvular/circulatory abnormalities. How do I get the doctors to listen?!