Mysterious Blindness

I have been experiencing severe vision loss since 2019. Every year, about twice a year, I lose about twenty percent of my vision. My vision loss started as a single floater and advanced to large grey spots and now complete blindness in my left eye. Can anyone at the Mayo Clinic help me?

Welcome @marionli. This sounds very distressing to be losing your eyesight and that specialists cannot find the cause. You ask if anyone at Mayo Clinic can help. I suggest you submit a request using the simple online form to find out. You can get to the form by clicking this link: http://mayocl.in/1mtmR63

Coping with loss of sight is something that the community here can help with. You might wish to join Don @dsh33782 and other members in this discussion:
- Low Vision: Let's share about coping day to day https://connect.mayoclinic.org/discussion/low-vision-1/

@marionli Hello and welcome to Connect. I'm sorry about all of your vision problems and most recent complete blindness in one eye. How distressing it must be for you.

Here is a link to apply at Mayo Clinic:
Mayo Clinic Application -
http://mayocl.in/1mtmR63
Do you know why your doctors have not been able to confidently diagnose your condition? Perhaps mitigating circumstances or multiple diagnoses are occurring. I'm curious, have you been evaluated with larger teaching hospitals or medical colleges in your area?

@colleenyoung
Thank you for your response.
I submitted my application for an appointment last week and completed my initial consultation on last Thursday. My doctor made the referral on Friday. I understand that it can be very difficult to be approved for services, even with a doctor's referral and with choosing to visit any location. Is there anyway to increase my changes of being selected to receive services?
Thank you or the resources, as well.
- Mother Seeking Diagnosis for Mysterious Blindness

@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

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.

Hi Rachel,

I found connect by researching support groups and the Mayo Clinic. Thank you sharing your family’s circumstances. I can totally empathize with your plight as my husband and I both struggle from vision loss. He is legally blind from retinoblastoma, and now I am suffering from a mysterious type of blindness. God Bless for being a resource for us all.
I am super excited to have my appointment, though. My appointment is with neurology. However, I am trying to receive an appointment with ophthalmology. I was told that I need a referral. Is the ophthalmology department at the Mayo as good as the rest of the hospital? Should I make my ophthalmology appointment before my planned visit, as well? Or, will the neurologist refer me at my initial visit?

Hi @marionli - I'm happy to hear you have a Mayo neurology appointment lined up. I hope it's soon.

Did you self-refer or has your PCP or current neurologist referred you? It almost seems that a neuro-ophthalmology appointment would be beneficial, unless it was advised to start with neurology. You will be in good hands at Mayo no matter the specialist, and most likely will be referred onto the next if needed.

If you have any questions or concerns about your upcoming visit please reach out to Mayo Clinic directly. They are very helpful and friendly. Do you have someone who can help if you are unable?

Hi @rwinney
I self-referred and my neurologist, referred me, as well. I am currently attempting to make an ophthalmology apportionment, too. I will try neuro-ophthalmology, as well., too.
I look forward to my visit and receiving answers. My family will be accompanying me. Do you know if the Mayo Clinic has a patient advocacy department?

Hello there. Do you mind specifying your needs for a patient advocate at Mayo so I'm able to better direct you?