Thread: Could It Be OMG
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Old 05-17-2018, 12:32 AM
Poorman Poorman is offline
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Join Date: May 2018
Posts: 3
5 yr Member
Poorman Poorman is offline
New Member
 
Join Date: May 2018
Posts: 3
5 yr Member
Default Could It Be OMG

I could write a book about this but I’ll try to be brief. It started about 25 years ago during a cross country motorcycle race. My vision went double, after a short rest it would normalize, then after a few miles it would return, over and over again. Went to an optometrist who sent me to a neurologist, MRI looked normal, nobody had any answers.
At first it was just occasional, only when I rode, keep in mind it’s very physical with lots of eye stimulus rushing at you. If I look back over the years my symptoms have been on a steady insidious climb. Symptoms that started only when I rode my motorcycle progressed to riding my bicycle, and then hiking, driving and then this last year it’s almost every afternoon and evening.
Over the years I’ve explained my symptoms to every Doc I come in contact with, at least 5 GP’s 5 different optometrists and anyone else who would listen. The only answer I’ve ever gotten was from my current optometrist, he diagnosed me as having esophoria about seven years ago, we tried prisms with no success. Then last summer it had gotten so bad that we decided maybe I hadn’t given them enough time so we tried another pair, this time I wore them 24/7 for 4 months, my eyes didn’t like them they just made things progressively worse, I gave them up before I hurt myself. I ask him about vision therapy, he said before we did that he wanted to clear me for myasthenia gravis, I said “we talked about that years ago but I don’t have any droopy face” he said yes but “there’s another kind called ocular MG”.
That started me reading everything I could find on the subject. After becoming more self aware I realized my symptoms were very much in line with OMG. I can do something like a short ride one day and have horrible diplopia and then do the same ride the next day and be fine. A couple bad days followed by a couple good days. Always good in the morning almost always symptomatic by evening with those symptoms (diplopia) varying a lot. Exercise really brings it on ESPECIALLY if my eyes are busy reading the ribbon of trail coming at you while traversing single track on a bike. So my OP sent me to a neuro OP. Took over three months to get in. Every test came back negative, they did Acetylcholine, repetitive nerve and single fiber EMG. He ruled out OMG because the tests were negative and he said I’ve had symptom too long for OMG. He ordered an MRI because my diplopia had been the worst in right lateral gaze and he suspected sixth nerve palsy. I’ve never had any symptom other than diplopia and blurr which I think is just very slight diplopia. No ptosis. They did the single fiber EMG on my orbicularis oculi which has never been symptomatic. His nurse called and said the MRI was normal and to have my OP send his notes, he did. After six weeks and I hadn’t heard back, I wrote to them and explained that my worst gaze had changed from right lateral to down gaze and that I had several episodes where left lateral was the worst. I asked that he reconsider OMG and maybe try a trial of prednisone. That was two weeks ago. I’m really tired of the waiting game, my local OP is 100% for a trial of prednisone and is encouraging me to drop the neuro Op and find a local Neuro that would do a trial run. I’m really tired of all the waiting, I’m seriously considering buying prednisone on line and trying it on my own, that’s how discouraged I am with the system! Anyone ever try doing that?
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"Thanks for this!" says:
AnnieB3 (05-17-2018)