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Mysterious Blindness

Eye Conditions | Last Active: Nov 28, 2022 | Replies (13)

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@marionli

@rwinney
Thank you for welcoming me to the platform. This is a great resource.
I have submitted my application and received a referral from my neurologist to the Mayo Clinic.
My doctors have not been able to diagnosis the problem because they are not sure where the issue lies. I have seen ophthalmologist, neurologist nd neuro ophthalmologist, that all believe that it is not in there wheelhouse.
I actually don't have any symptoms, other than the vision loss. It's really scary because I've had multiple MRI's, CT Scans, etc. The hospital overseeing my care is Emory Hospital in Atlanta, which is a research, tertiary referral hospital. Would you happent to know of anyway that I could imporve my chances of being seent at the Mayo Clinic?
- Mother Seeking Diagnosis for Mysterious Blindness

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Replies to "@rwinney Thank you for welcoming me to the platform. This is a great resource. I have..."

You are very welcome! I'm glad you found your way to Connect. May I ask how you came about finding us?

I can imagine your vision loss is quite scary. I empathize as I've had vision problems from a corneal disease, my Mom experiences ocular migraines which produce temporary vison loss, and my Dad also has corneal disease and is blind in one eye as a result. It must be awful to not know why this is happening for you.

Awesome news that you submitted a Mayo application. It sounds like a wise choice at this point. Self-referring is a great first step and you have already had your neurologist refer you as well. That's all I'm aware of to forward the process. Producing your medical records ASAP including tests and scans, and history surrounding the nature of your problem to be reviewed can help expedite, and then Mayo decides if they think they can help you or not.

My fingers are crossed that the ball gets rolling soon and you get accepted to be seen and evaluated. 🤞 Will you please report back on your progress? I will be curious.
Keep the faith, my friend. It will get figured out.