← Return to Cerebral Brain Atrophy: Anyone else out there?

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@amandajro

Hello @pettis and welcome to Mayo Clinic Connect. I can read the struggle in your post and can understand your frustration. I am hoping members like @howardjames and @oldkarl can come back to the discussion to share their experiences and connect with you.

When was the last time you were in touch with your team in Jacksonville?

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Replies to "Hello @pettis and welcome to Mayo Clinic Connect. I can read the struggle in your post..."

Quick answer, and more later. First, what kind of genetic test did you have? Full genome or 1%? What is the specific name of your issue. I have "disappearing white matter in my cerebrum, as well as in area 24 and 9." This is genetic. Second, Hydrocephalus is genetic, and I have the gene. Get yourself a full genome analysis from professionals, such as at Dante, Sequencing.com, Ambrygen.com, etc. You have to get help now. Medicare is covering most of this, if the clinic and lab are certified and your doc signs off. Old Karl ps. I will be glad to look up the gene(s) of hydrocephalus I have, if you have not done so.