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Diagnosed with flecked retinal syndrome. Suffering from night blind, blind spots, bad eye-hand coordination. Treatment?

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General & Family Physician
Practicing since : 2005
Answered : 2585 Questions
I was initially diagnosed with "flecked retinal syndrome" 30 years ago at Wake Forest. Now with many tests they have diagnosed a variant of retinitis pigmentosa.I always have been nightblind,blind spots, bad eye-hand coordination,etc.Dr Slusher (retired) recommended follow-up Q 2-3 years. Luckily it does not appear to be progressing at all quickly. They have 30 years of records there. They are finally getting a new retinologist but I have been addvsed by receptionist that they will not accept my Cigna insurance at all, I realize it is out of network. Do I need to start all over again with evaluation? I,m not sure they have good access to old records since now on Epic. I,d be glad to go anywhere in state to someone who really specializes in RP.
Posted Fri, 6 Sep 2013 in Vision and Eye Disorders
Answered by Dr. Prasad 2 hours later
Brief Answer:
You need not repeat tests

Detailed Answer:
Retinitis pigmentosa which is a chronic degenerative condition has no specific treatment. We follow up patients to assess the progress of condition and treat any accompanying conditions like macuolopathy. New methods of treatment like transplantation of retinal cells or microchips are still under trial. Therefore if you are planning to visit a new doctor, I don't think they will need to repeat all the battery of test done till date. However they will need to follow you up regularly (as per his/her protocols) and order test that are minimal and simple like visual fields, Electroretinogram and Ocular coherence tomography whenever needed.

I would have loved to help you further with reference, however as I practice far away in India, I wouldn’t not be the right choice to do that. Nevertheless, you can choose a retinal specialist from the list of associated centres. He/she can evaluate your current eye functions and if his expertise is limited can refer you to the XXXXXXX experts.

Hope I solved your concern. Let me know if you need further assistance, I would be glad to help you within my expertise.

Good luck!!
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