NeuroTalk Support Groups - Misdiagnosed macular degeneration?

I come to you, a newbie, and thank you in advance for your insights and assistance. We live in a small town, by most people's standards. I am beginning to wonder if doctoring here is not as good as in the "big cities."

I have been diagnosed with macular degeneration by an ophthalmologist. I was shown the drusen on my retina, so maybe there is a retina problem but I have difficult trusting that its a macular issue.

I feel as if, when one physician gives their diagnosis, everyone physician down the line assumes it to be true. Including when the first radiologist reads an MRI - no one else ever looks at it again. The others just assume the report is fully accurate. How would we know if there were a mistake? If there is, then every diagnosis afterward would be built on a faulty foundation.

My primary symptom is patchy blind spots, mostly on the inner corner of both eyes, but unequal in size. I do NOT have central vision loss as my primary symptom. In fact, I don't seem to have central vision loss at all. I cannot find a single reference to "macular degeneration" being anything except central vision loss. However, once the ophthalmologist gave that diagnosis, everyone else (GP and neurologist) seems to accept it as the cause of my symptoms. I feel as if I'm being dismissed.

If I were looking at you and closed my right eye ... I would only see your right side - fully half of the image closest to my nose would be nonexistent. If I were looking at you and closed my left eye, I would see more or you than on the other side, but the image closest to my nose on that side - lower third - would be gone.

When riding in a car, the cars ahead appear to be running into each other, on the wrong side of the fog lines, sometimes a little doubling of an image but not always, and at a certain distances half of a car is missing. The lines in the road merge into a point, but not always to one side or the other.

I can correct the images by covering either eye. I can also correct most of it by tilting my head sharply to either side. However, I still have blurry enough all-over vision it would still unwise for me to drive in heavy traffic.

My GP ordered an MRI, but said it didn't show anything they wouldn't expect "for my age." (Whatever that means .. no explanations. I think I might be a relatively young 68 because I've told frequently that people are surprised when they learn my age.) I take no medications .. just some supplements I started taking after being told I have macular degeneration.

In other words, the reader of the MRI said he didn't see a stroke or tumor. No one, except the radiologist who reads the results, apparently ever sees the pictures for themselves - nevertheless everyone accepts his opinion as true and accurate.

I went to a neurologist recently, in a bigger city nearby. We had to ask, outright, for a referral to a neurologist or would never have had the chance to see one. My GP said I could get into the one he sent me to more quickly than a couple of others because the (better ones was his inference) were younger with more recent training and it would take months to see them. But he said the guy he referred me to would be good enough. The neurologist was personable and easy to like. Even so, I still thought he heard what he expected to hear and was not confident he really listened, though I'm sure he thought he did. When he asked about double vision, for instance, I think he heard that double vision was constant .. but it isn't. He ordered a blood test for myasthenia gravis but said he doubted that is the problem because I do not have a pronounced droopy eyelid.

We're discouraged. I'm even wondering if they think it's a psychiatric issue.

Ideas? Anyone else have a similar story?

Thanks again for your help.