i'm not sure what I should do with my diagnosis of macular degeneration

by Pam
(Keizer, OR)

Went in for a quick vision test as I was thinking of getting a prescription snorkeling mask.

I am 59. She simply told me that I had AMD (Dry) and beginning cataracts. The cataracts don't bother me as I know eventually I can have them removed. She gave me the little chart, said "I'm sorry"and walked me to the door.

What do I do now? I am going to go to another Optometrist for a 2nd opinion. I bought the vitamins I read about on the John Hopkins and Mayo Clinc websites.

I went in immediately to check on early retirement fearing that I would be unable to drive/read, etc. in the future.

However, I can't find anything which tells me a basic timeline. For instance, should I retire now and do my traveling while I can still drive and see things?

Since I am at the beginning stage - do I have several years (10+) before I will need to worry about the macular degeneration progressing?

I don't want to make sudden life decisions - yet I also don't want to lose out on some traveling and snorkeling because I waited too long. I am not well-to-do. Moderate income.

Anyone with a story of when they first found out they had age related macular degeneration and then the amount of time it took going step by step of macular drusen taking over?

Is there something else I should be doing or specialist I should be seeing?

REPLY

Hi Pam,

Thanks for taking the time to share your situation and your concerns. Unfortunately, you are not alone in your experience with an eye professional - a diagnosis with little information or direction.

First, please make an appointment with a retina doctor. A retina doctor is an ophthalmologist that specializes in diseases of the retina.

Also read the page macular degeneration prognosis. Here you will find a link where others have shared about their own experience.

Although I think websites are great and full of good info, the two books I recommend for people like you to read are:

1. Macular Degeneration: A Complete Guide for Patients and Their Families


2. Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight


Both books are written by ophthalmologists who specialize in macular diseases.

Let us know if we can address any other concerns or questions.

Kind Regards,

Leslie

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i'm not sure what I should do with my diagnosis of macular degeneration

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Oct 03, 2011
Rating
starstarstarstarstar 		Fighting for Compassion
by: Jean in Boston

Eye professionals seem to be lacking in both information and compassion when it comes to macular degeneration.

My first experience about 10 years ago parallels yours--this with an optometrist. The first retinologist I saw said, "Oh it's not so bad. You just won't be able to drive or read."

Eventually, I made my way to the Massachusetts Eye & Ear Infirmary in Boston, and even there screened retinologists until I found the right one for me.

My advice is to learn as much as you can about this disease, ADVOCATE FOR YOURSELF, and educate those around you. The diagnosis is pretty horrible. The treatment (for wet MD) is no fun. But you are not alone.

With best regards,
Jean in Boston
Oct 02, 2011
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starstarstarstarstar 		Macular Dystrophy - Pattern Dystrophy
by: dgi

I was diagnosed with first, age related macular degeneration (AMD), and then later, the correct diagnosis of pattern dystrophy at age 60.

Six moths after I'd retired.

I was completely taken aback and just like you, ushered out of the first optometrist's office in a daze, with little help.

I would recommend a referral to an ophthalmologist who specializes in retinal disease to get a correct reading on what is going on with your eyes.

Its very difficult to live with the uncertainty these eye diseases present. All you can do is to take every preventive measure you can and proceed positively.

I do the diet, the vitamins, the exercise and try to get adequate rest.

No-one is sure what will happen with any of us. I try to find hope in just living life as best I can.

Hope this helps some...
Oct 02, 2011
Rating
starstarstarstarstar 		My Story of Macular Degeneration
by: BK

Predictions are pretty unreliable as far as I can make out. I can describe my case which is just one story.

11 years ago I was told I had macular drusen. Two years later I was told in three years I would lose central vision in both eyes.

Four years later my left eye had slight problems with horizontal wavy lines. After nine years, the left eye started showing shadows and at Johns Hopkins they diagnosed wet AMD in the left eye.

After four Avastin injections there was a hemorrhage, resulting in an increase in the retinal shadow, and after one more injection, the conclusion was (this was done in Germany) that my left eye was "stable" at 20-30% visual acuity. The right eye is 100% with glasses.

I'm now 74. Since the first diagnosis I've take Icaps vitamins every day and adjusted my diet to include more leafy greens and fish. I don't eat red meat. I'm guessing this explains why, in spite of sooner predictions by lame physicians, it took so long for the right eye to go bad.

I think more regular cardio exercise would have helped in a big way.

After feeling sorry for myself and going through the initial horror of injections (way overestimated; the anesthetic works well)I find that with my good eye and the adjustments by the brain I can do everything, just as many people with the use of one do every day. There is no sign of trouble in the right eye.

I find that practically speaking, and living day to day, things are fine. If life is interesting, you just forget about the condition.

According to Johns Hopkins statistics, the injections would have saved the left eye (95% percent chance of preserving my vision) and that the remaining eye had a 25% chance of developing wet AMD.

Obviously, no one knows for sure. But it's like death, isn't it? Who knows when and where and how?

Can I possibly recommend not getting overly worried about the future? That would be hard to accept, but, at least in my case, I can't complain.

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