Ellekiriel

213d

Hi, I’m trying to get doctors to take me and my research seriously. My maternal aunt has a cerebral AVM, that was diagnosed at almost exactly the same age I am. I have had 4 seizures since December and multiple, very infrequent, and minor seizures since I was 17. My serum tests show abnormalities with my T3 free, elevated testosterone, low osmolality, and low but still considered normal BUN which all suggest something is affecting my endocrine system. How do I get them to see they need to take a look at my endocrine system and MRI for an AVM affecting my pituitary/hypothalamus? Nobody seems to have made these links and nobody will listen to me. I have gained about 50 pounds since 2019 after being an athlete who *never* struggled with being overweight my entire life. All the doctors think my issues are because I’m on BMI point into the “obese” range now. How do they not see the obesity might be *caused* by endocrine dysfunction? Especially considering everything else.

Congenital Anomalies of Circulatory System

Pseudoseizures

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  • Ellekiriel

    213d

    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?!

  • CuttlefishNugget

    206d

    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.

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