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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Hi my name is Chris and I am new to this forum. I am so sorry to hear your story. You must feel frustrated and afraid that all of the tests have not revealed the diagnosis. When I recently had a CT scan to check out my neck pain they found that I have had a small cerebellar stroke. I don't know when this occurred so I am afraid of another stroke. I have other neuro symptoms but so far no diagnosis. I can understand how frustrating it is when the docs cannot make a diagnosis. I wish you well and hope they can help your loved one find a diagnosis.

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@varken51

Hi my name is Chris and I am new to this forum. I am so sorry to hear your story. You must feel frustrated and afraid that all of the tests have not revealed the diagnosis. When I recently had a CT scan to check out my neck pain they found that I have had a small cerebellar stroke. I don't know when this occurred so I am afraid of another stroke. I have other neuro symptoms but so far no diagnosis. I can understand how frustrating it is when the docs cannot make a diagnosis. I wish you well and hope they can help your loved one find a diagnosis.

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Hello @varken51 and welcome to Mayo Clinic Connect. Thank you for joining this discussion to share your experience and support. Am I right that you were responding to @mistyjohannsen?

How long ago was your CT scan that revealed your stroke?

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My CT scan was performed Feb 24. The report said "a small old right cerebellar stroke." It was not seen on a previous CT done in 2018.

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