Hi everyone,
My daughter started experiencing severe headaches about two years ago. We took her for CT's and MRI's which indicated she had some large masses of something on her brain. Doctors ruled out tumors and decided the large spots were brain lesions caused by inflammation. Our doctors tried to call the lesions several different conditions or things but through test all these were ruled out. I'm talking about things like ADEM, Sarcoidsis, MS, fungus along with many other things were ruled out.
We have had her in and out of the hospital for the last two years almost and are currently seeing a team of doctors at the Duke University Medical Research Center at Duke University in North Carolina. Recently her immune system hit rock bottom but she still has the brain lesions which cause her severe headaches. They did diagnose Immune condition and are saying she has CVID (Common Variable Immunnodeficiency). If this holds true my daughter will need antibody infusions for the remainder of her life. However, her doctors still do not have any explanation for the brain lesions and cannot at this point prescribe any treatment other than an anti inflammatory drug which has been steroids up to this point.
I am looking for anyone who might have any knowledge of any individual who may have had brain lesions caused by possibly an Autoimmune disorder and had an impossible time getting rid of them or getting them under control. Please let me hear from your
Desperate!!!!!!! and thanks for any input.