Vision problems undiagnosed

[BenandLucy1]

Hi all. I’m posting on behalf of my girlfriend. She’s had a range of neurological issues that no doctor has been able to find the cause of.

I will make a separate post explaining those. This post is for guidance in regards to the vision issues she’s been having.

Her symptoms are blue schlera, blurry vision, and what she describes as “shadowy” vision. She has been seen by neurologists, neuro-ophthalmologists, optometrists, GPs, etc and she hasn’t gotten any answers.

She had low iron which caused her ferritin levels to drop, however, her levels are back into the lows of the acceptable range and all the symptoms remain and appear to be worsening.

The optometrist could not find anything abnormal with the eye. She has 20/20 vision and some noted astigmatism.

Brain scans don’t show any intracranial pressure or obstruction to the optic nerve. Pseudo tumor, MS and Lupus have been ruled out. EDS has been ruled out also.

Basically, nothing productive has come about from these exams and the doctors are dragging their feet in helping further.

We’re just looking for some direction as her vision attacks have gotten worse and she fears permanent vision loss. Long term disability is not a feasible option and we’re not sure where to go from here.

We live in Michigan and so I’ve been researching how to be seen by UofM which has a state of the art medical practice. Any recommendations on vision centers or tests to bring up to the doctor would be helpful.

In the meantime, she has an EMG scheduled 10 days out and now seeing a psychiatrist to help tackle the anxiety which is surely making things worse.

Thanks in advance.

[John C Hagan III, MD, FACS, FAAO]

You might want to gather up all the tests and head for the Mayo Clinic, which gets unusual and difficult problems from all over the world. One thing I would check if you have not done so is an EEG to rule out atypical seizure disorder and consider atypical visual migraine.

[John C Hagan III, MD, FACS, FAAO]

What do you mean by "vision attacks"   is her vision normal between attacks, and describe what a "vision attack is and how long it lasts"

[BenandLucy1]

Thank you for your  response. She describes having altered vision nonstop but she can’t find the words to describe it further.

She experiences the shadows throughout the day with a few breaks here and there. The shadow goes always when she focuses on it.

The blurred vision “attacks” occurs multiple times a day and happen for a few minutes at a time. This morning for example, she couldn’t make out the text on her phone when it happened.

She’s experiencing a new occurrence as of this morning which is what she receives as waviness in the lower half of her peripheral (not just on the edges; from side to side). This happened twice today.

*As a major side note that I didn’t mention previously, she has brain fog and focus issues throughout the day.

[John C Hagan III, MD, FACS, FAAO]

You might want to gather up all the tests and head for the Mayo Clinic, which gets unusual and difficult problems from all over the world. One thing I would check if you have not done so is an EEG to rule out atypical seizure disorder and consider atypical visual migraine.