Macular Degeneration Diagnosis Subjectivity, My Diet

by Vickie
(Michigan)

I am 58 years old and have dry macular degeneration. I still see just fine if I use both eyes. If I close either eye I start seeing distortions.

I've been to three different eye doctors and one retinal specialist in the past four years. So far, the main thing I've been struck by is the subjectity of the diagnosis.

The first eye doctor took some photos of the drusen in my eyes and said I should have an OCT test to see if I had macular degeneration. He indicated that the macular drusen were getting worse by showing me a photo he had taken of my eyes a couple of years earlier that also showed drusen, but less of it.

I asked him why nobody had mentioned the drusen prior to this and he said that I "did not fit the profile" for macular degeneration. He did two optical coherant tomography tests which ended up being 6 months apart.

Then he said that I did NOT have macular degeneration. He said that my macula was degenerating but that it did not "fall within the parameters" of having macular degeneration. He suggested I start taking eye vitamins and sent me on my way.

A year later on a road trip from Michigan to Texas, I noticed that the cement overpass railings above the highway had "crimps" in them.

I made an appointment with a different eye doctor. She used no special equipment, just looked in my eyes with a light and saw the drusen. "You have drusen. You have macula degeneration," she said. "Take the vitamins."

With her diagnosis, my medical insurance kicked in to cover the cost of the visit.

The different reactions of the two professionals to the drusen was bothering me so the next year I made an appointment with a retinal specialist.

After a whole bunch of tests he said he was "80 percent sure" I had macular degeneration but was "20 percent" thinking it could be pattern dystrophy. Again, I was told to take the vitamins.

A year later, this past spring, I tried my fourth doctor. This one, I think I'll stick with. After I told her my story and frustrations she looked in my eyes and said I had macular degeneration. She explained there are no cut-and-dried guidelines for diagnosing the progression of dry macular degeneration. It's subjective, depending on who you see.

She urged me to take the vitamins. I told her I was reluctant to take megadoses, that I was eating a very healthy diet and exercising, and that as far as I could tell I still had "early" macular degeneration and that from what I had read the vitamins hadn't been shown to have an effect at that stage.

She had me take another OCT test and called me back a week later with her diagnosis of "moderate" macular degeneration, that it had "advanced from early but was not intermediate."

I'm still reluctant to take the vitamins. Just before I saw her I had switched to a high soluble fiber, high protein, high antioxidant, high omega-3, low-sugar diet. (I had done this for other reasons than my eye diagnosis but it seems to be having a marked improvement on my overall well-being.)

I eat 1/2 cup legumes at every meal plus a palm-sized serving of meat, fish or eggs at every meal. I eat virtually no sugar of any kind. I try for five servings of vegetables a day. I also eat 1 cup of almonds or pecans a day, at least 1 1/2 hour away from the beans. I have even severely restricted fruit, which used to be my mainstay.

Karen Hurd is the Wisconsin nutritionist I've been working with. I sought her advice because of overall anxiety levels but I informed her of the AMD. After five months I feel great.

I'm sure there's some tweaking I will do in the future. If I can find a food-based vitamin that doesn't include stimulants, I would take that.

At this point I agree with some advice I got a couple years ago: Macular degeneration is a degenerative disease; do whatever you can to keep your whole body from degenerating.


REPLY

Hi Vickie,

Thanks for sharing your story and your experience with being diagnosed with AMD.

My husband and I take a whole food vitamin and eye vitamin, rather than one that has synthetic ingredients. I am not sure if any of the ingredients are considered stimulations but here's the info on it:

All Natural Vitamins

Kind Regards,

Leslie Degner, RN, BSN