Undiagnosed Brain Bleeds

Posted by mistyjohannsen @mistyjohannsen, May 24 2:48pm

I have a 20 year old that has had multiple brain bleeds over the past several months but his doctors have not been able to come up with a diagnosis despite extensive testing including two brain biopsies. Anyone has had or heard of any such experience?

Hello @mistyjohannsen and welcome to Mayo Clinic Connect. I apologize for having missed your post until now and wanted to make sure to respond so that we can connect you to other members who may be able to provide you with some much needed support.

In the meantime, this may be a resource that can help:
– Subarachnoid Hemorrhage: Symptoms and Causes:
https://www.mayoclinic.org/diseases-conditions/subarachnoid-hemorrhage/symptoms-causes/syc-20361009#:~:text=Bleeding%20usually%20results%20from%20the,blood%20vessel%20or%20health%20problems.
You said that your 20-year old has been seen but his doctors haven't found a diagnosis yet. What sorts of tests have they done so far? Has he had any additional diagnostic tests or procedures done since you posted and how is he doing?

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@amandajro He has had all possible tests including brain biopsy: CSF. Echo TE,  CSF analysis, PET scan, brain angio, brain MRI including vessel wall imaging, heart, MRI carotid, MRA brain, MRA spectroscopy, autoimmune diseases panel, blood clotting disorders and genetic testing. Doctors have not been able to come up with a diagnosis. They are monitoring him with an MRI every month and have put him on a dose of steroids but have basically told us they have no idea what they are treating.

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