Palinopsia Literate Doctors
Dr. Markley is currently treating at least two of "us" that I know of at the New England Regional Headache Center in Worcester, MA. He is very interested in this ailment and seems to be doing some groundbreaking work. He is also the only doctor I have heard of who has "cured" palinopsia for one of his patients.
Dr. Shirley H. Wray, MD, Ph.D - Boston, MA
Professor of Neurology at the Harvard Medical School and
Director, Neurovisual Disorders, at the Massachusetts General Hospital
What a great response! She promptly replied via mail. She had "...taken the liberty of sending your letter to a colleague of mine, Dr. Marc Dinkin....This will give you the chance of an opinion prior to my return to Boston...late in December."
Dr. Simmons Lessell, MD - Boston, MA
Professor, Harvard Medical School
Director, Neuro-ophthalmology Service Massachusetts Eye and Ear Infirmary
He co-authored "Palinopsia and polyopia in the absence of drugs or cerebral disease."
Dr. Lessell responded quickly to my letter. He expressed his interest in the condition and was willing to see me as a patient. He is considered one of the experts on this condition. His approach is more towards treating symptoms over finding an answer. I still believe there are answers out there, so I'll be leaving him for when I've reached the end of that road.
Good Doctors I have Seen:
Dr. Allison Ryan - Northampton, MA
Neurologist
Doctor Ryan is very well rounded and seems to keep abreast of a myriad of conditions which can exist with, or even mimic neurological conditions. But, don't expect a nurturing mother figure. If you need a 'feel good' doc, she's probably not the one for you. She's all business.
She thought migraine with aura could not adequately explain my symptoms. Her initial impression was that I had paraneoplastic retinopathy (cancer). An electroretinogram ruled that out. He favorite theory is that I have encephalopathy related to autoimmune thyroiditis. It's extremely rare, but fits. From my history, she also thought I had Lyme disease. She got me refferals to a retinal specialist, an endocrinologist for the thyroid, and an infectious disease/immunologist for Lyme. My infectious disease doc confirmed...I have Lyme Disease! Or do I? Controversial diagnosis.
02/98 update
Dr. Ryan has given up on me. She's out of ideas and wants to wait and see if I get better or worse. I haven't given up on finding answers, or at least some relief so...off I go to find a new neurologist.
Dr. Deborah Hoadley - Longmeadow, MA
Infectious Disease, Immunology
I just saw an Infectious disease Doctor...Deb Hoadley in Longmeadow, MA. She diagnosed me with Lyme disease and wanted to start treatment immediately. I opted to get one more round of tests to confirm the Lyme, and rule out any other conditions. These tests will be including an enhanced MRI, EEG, Visually Evoked Response test and a lumbar puncture. She was quite happy to oblige, saying "Sure! That's great science! Most people just want to start the treatment immediately and forgo further testing." Those tests should be coming up in the next week or two. I'll keep you informed!
12/31/07 Update...
I started antibiotic therapy for Lyme disease on 12/21. I was told that I may possibly experience the die off effect, if the drugs are doing their job. Essentially, I'd take a turn for the worse due to the toxins the dying bacteria release. I believe I'm at that point. At least I hope that's what it is. My fatigue has become crippling, my joints are stiff and aching to the point I can't even pet my cat for more than a minute. Pain is now keeping me up at night. Geesh, sure hope this is good news. Die Lyme, die! Still wondering if I'm on the right track. Lyme is a shaky diagnosis at best. MRI and Lumbar puncture came back normal.
Dr. Marc J. Dinkin, M.D. - Brigham & Women's Hospital, Boston, MA
Neuro-ophthalmologist
I have hopes for the good Dr. Dinkin. He called at Dr. Wray's suggestion, and left a message saying that he hoped to see me "at my convenience." WHAT!?! Ok, even if it wasn't meant to be taken literally, I love him for the gesture. I'll be making that appointment a.s.a.p.!
UPDATE:
I saw Dr. Dinkin. He's wonderful. Easy to talk to and quite interested....most of the battle with docs. He suggested I wean myself off Lexapro, since SSRIs have been known to cause palinopsia. He also left open the possibility that Lyme disease, disease of the retina or beginning MS could be to blame. He scheduled an electroretinogram (coming up soon) to test the electrical impulses of my retina...specifically the cones and rods. He just checked back in with me via email to see how things are going. Love this guy!
Update: electroretinogram was normal. No effect from coming off Lexapro.
Dr. Andrew Schamess - Lenox, MA www.lenoxdoctor.com
Internal Medicine
My new PCP. If you're looking for a good primary care physician...this guy rocks! He's interested, patient, and uses common sense (the most uncommon of things.) I feel like I can take a break now...someone besides myself is in charge of finding answers. Never liked the job...I gladly give it to him.