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Mysterious Blindness

Posted by marionli @marionli, Oct 26, 2022

Severe vision loss over two years. I have had 4 MRIs, 2 lumbar punctures, various labs, 17 Eye Exams, 1 CT scan. Additionally, I have been evaluated by 4 Ophthalmologists, 2 Neuro Ophthalmologists, 2 Endocrinologists, and 1 Neurosurgeon. My doctors have explored possible diagnosis of idiopathic intracranial hypertension, papilledema, sarcoidosis, lymphoma, pituitary tumor, brain lesion, and abnormal tissue near the optic charisma and pituitary gland. However, all of my doctors have not been able to confidently diagnose my condition.

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marionli | @marionli | Nov 15, 2022

Hi,

I’d like to speak with someone regarding the best way to receive assistance getting around the campus and any amenities for patients ie. parking, subway, sending medical records, bringing medical records to have uploaded.

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Rachel, Volunteer Mentor | @rwinney | Nov 28, 2022
In reply to @marionli "Hi, I’d like to speak with someone regarding the best way to receive assistance getting around..." + (show)
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Hi,

I’d like to speak with someone regarding the best way to receive assistance getting around the campus and any amenities for patients ie. parking, subway, sending medical records, bringing medical records to have uploaded.

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Hello @marionli -

Here is a visitor guide link with information regarding travel, lodging, parking, etc for Mayo at Rochester, MN.

- https://www.mayoclinic.org/patient-visitor-guide/minnesota

Will you be visiting the Rochester campus? Please let me know if you need any more information. Your appointment is coming soon. Are you anxiously waiting?

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marionli | @marionli | Nov 28, 2022

Yes, I am definitely looking forward to my visit.
Any tips for driving to Rochester from Minneapolis, in the snow?

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sherry863 | @sherry863 | 4 days ago

I feel like Doctors are not as good as they used to be? I've been going through this for the last 20 years and literally had to tell them that I had a tumor on my pituitary gland for them to find it when they did my MRI that was my third MRI at the same place and the only reason I knew it was there for sure is because my pain doctor which I took the CD to was also a radiologist and seen my sarcoidosis was attacking my pituitary gland. But that took me 20 years to find that doctor so if you find a good doctor you better hang on to them. Especially if you're a woman because I've been told everything from I'm just getting older to I'm depressed. When my periods were normal one day and all of a sudden never had another one I was 35. I had the worst headache of my life I literally thought my head was going to explode it lasted for 3 weeks my mom took me to two different hospitals and they didn't do anything I had to come home and lay in bed for 3 weeks thinking my head was going to explode or I was going to die. I've had to do so much research on my own it's crazy.

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dorine | @dorine | 4 days ago
In reply to @marionli "Hi Rachel, I found connect by researching support groups and the Mayo Clinic. Thank you sharing..." + (show)
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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?

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@marionli Did you ever get a diagnosis for your vision loss? Was there any pain with the vision loss? I have a condition called Naion, sudden painless vision loss, usually in people over the age of 50.

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rpstrucking2018 | @rpstrucking2018 | 3 days ago
In reply to @dorine "@marionli Did you ever get a diagnosis for your vision loss? Was there any pain with..." + (show)
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@marionli Did you ever get a diagnosis for your vision loss? Was there any pain with the vision loss? I have a condition called Naion, sudden painless vision loss, usually in people over the age of 50.

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@dorine yes I do have

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