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Dr. David
Dr. David, Board Certified Physician
Category: Eye
Satisfied Customers: 42829
Experience:  Experienced Physician trained in New York City. I'm ready to help.
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I have been diagnosed with a rare inflammatory retinal

Customer Question

I have been diagnosed with a rare inflammatory retinal disease four and one half weeks ago at the Bascom Palmer eye institute in Miami. The disease, which is in the so-called "white dot" family (acute posterior multifocal placoid pigment epitheliopothy or multifocal evanescent white dot syndrome) was supposed to be "self limited." As predicted, the small "dot" lesions in the peripheral areas of the retina have resolved substantially, along with overall inflammation. The exception is the macular region where an unknown mass started growing about one week after I received my diagnosis. At first, it was thought to be a non-permanent scotomata which is a known sequela during the active phase of this disease. Unfortunately, I have had four OCT images and two fluorosciene angiographies in the past three weeks. Still, the mass, which initially appeared to affect only the sub-retinal choroid region with a few spikes upward has now grown up into the retinal pigment epithelium in the foveal region. Ophthalmolgists (four separate) have been unable to identify the substance in this mass (now larger at both sub retinal and macular regions, but have ruled out neovascular tissue (avastin injection did nothing to reduce it) or inflamed membranous tissue (steroid injection has not resolved anything but I only received it last Thursday). I have been informed that macular photoreceptors cell damage is now likely irreversible with its related central vision loss and the mass may be debris cells or white cells sloughed off during cellular destruction. The ophthalmologists now all want me to get a full oncological, hematological, and immunological "blood work up" because they suspect a systemic condition and am concerned about my other eye or cancer. Is there still any hope of restoring some central vision? The OCT's and FA's now show vertical lines and non-colored clear dots in macula consistent with my blind spot. What type of specialist can order these tests. Can a specialist in hematology order these? Do I need to make three appointments?
Submitted: 6 months ago.
Category: Eye
Expert:  Dr. David replied 6 months ago.

This is Dr. David

yes, there is hope to be able to slow down or return some of your central vision.

you need to see a hematologist onoclogist to run test like a full body PET/CT scan, colonoscopy. PSA blood test, skin evaluation to look for sources of cancer.

your eye doctor can refer you to a hematologist

or your primary care doctor can help you find one.

I have had patients who have had neuroendocrine tumors in their body cause autoimmune retinopathy and loss of vision from a cancer process going on in the body. it is very rare, but can happen.

let me know if you have other questions.

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