Who is the Dr. House for vision issues?

Post date: 2021-05-04 07:06:05

My neighbor has not been able to get a DX for central vision loss and she is seeking a neuro-opthamologist and eye institute for further insight, possible treatment.

She particularly wants to know if she can travel internationally to see grandchildren without risking her remaining vision.

The problem is described as "ganglion cell degeneration"
She has been told "this is not glaucoma"
Her ocular pressure is lower than average.
I call it VITING (Vision Issue That Is Not Glaucoma)

She has Erlers-Danlos, and arthritis. Her joints are very fragile.
Her lymphocitic colitis has been controlled by an inhaled steroid, Budesonide 3mg, for 15 years.
Her general health, BP, BG, nutritional status and bloodwork all seem to be good.

She has lost color vision, mostly in the left eye.
Blue-Green is a bit shaky in the right eye.
Her central field loss is making reading very difficult and she says the words "don't stay in place."
(I think this is called "visual stress" and we will address that when we tackle coping technology - reading equipment, etc. But she does not want to work on that until the more pressing issues (DX and Can I see my darling grandchildren?) are dealt with first.

Ask Mefi - Do you have experience with atypical or hard to diagnose vision issues? Where are the the sage minds to be consulted on this?

Can you recommend an eye institute working on regenerative therapies (stem cells, proton?)

Do you know of any online forums or support groups for atypical vision issues? I will also hook her up with low vision support.

My very sincere thanks.

Please click Here to read the full story.