I Woke Up with Lupus and Went to Bed Visually Impaired.

Photo depicting visual field.

I awoke today with Lupus. By the time I went to bed, I had been diagnosed with a very rare form of Sever Eroding Osteoarthritis (incorrectly diagnosed as Lupus in 1989). Oh, and for extra fun, I am also going blind, but the docs don’t know the cause yet. (Yey me!?/*&$%@^)

Follow My Finger

Our next appointment was with the neurologist that I was referred to by the orthopedic surgeon, Dr. H. The neurologist Dr. M. said it would only be a half hour appointment since he squeezed me in. He is testing me for Myasthenia Gravis but is 95% sure I don’t have it. He also ordered a cervical spine CT to see if my issues are caused by compressed spine. The really scary part is that I  failed the part of the neuro exam that looks at visual field. He had me cover my left eye and my right side was unable to see anything beyond a tunnel. It’s like looking at the world through a tunnel (hence why they call it tunnel vision). It explains the car accidents, the falling and bumping into people and things.

I was sent immediately for an ophthalmology exam. Ophthalmology is at another campus so we had to get a cab to get there. I saw a Fellow; Dr. A. and she said my intraocular pressure was good; indicating I don’t have glaucoma. That’s the good news; the bad news is, she has no idea what it is. She scheduled me for a visual field test tomorrow and to consult with her attending, Dr. S.

Today was emotional to say the least; my epiphany in the neuro exam was more like an emotional breakdown. All I keep thinking is “I’m screwed”. My mom keeps telling me not to worry until I have to but I can’t help how I feel. I’m petrified.


Author: Admin

TENAYSHUS (Tenacious Blind Girl) is a retired Registered Nurse who needed support following her diagnosis of Retinitis Pigmentosa, one of many conditions that cause low vision. When she could not find a support group, she learned web design to build LowVisionSupportGroup.com to help others impacted with Low Vision. The site was created using accessibility-ready web authoring tools.

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