Excuse Me, Doctor. May I Ask a Question? I'm New to This.

You will find articles on this site and others with lists of questions to ask your eye specialist when you're newly diagnosed with macular degeneration (AMD or MD). I'm not here to repeat them. I'm here because part of what I've been doing for the last 4 years is talking to people right after their diagnosis.

A new diagnosis can feel overwhelming

You may have felt any number of emotions when you were first diagnosed including shock and anxiety. Most people say they were overwhelmed at the first appointment and didn't hear much after the words "macular degeneration". You may have walked away not having asked ANY questions because you just didn't know what to ask. That is normal!

Preparing for your next appointment

You will be scheduled for another appointment. When depends on what your eye specialist found. If not, you should definitely schedule a follow-up. The second appointment is your chance to get prepared so that you get the information you missed.

There may be some of you who had the diagnosis some time ago and still don't know much about the disease. I hope that these questions will help you, too.

Knowledge is power

Knowing what macular degeneration is and how it progresses is key to being able to understand what lifestyle changes you can make or what treatment options are best for you, in my opinion. That includes eating eye-healthy foods, making sure your overall health is as good as possible, and following other recommendations that I think make up the AMD Lifestyle.

Find accurate and helpful information

On the list of questions below, you'll find words you may not know. You can find a great glossary in the article "Glossary – Macular Degeneration Terms."

You may not completely understand how the disease process works. With the internet, there are many opportunities to find information. I caution you that not all of what you find is accurate. For that reason, I recommend that you use a source you can trust. I AM biased, but I think this site is one of the best places for you to find both accurate and helpful information.

How to use the search tool on our website

If you are new to the site and came here from the Facebook page, look up at the top of this page where you'll see – going from left to right – the letters "MD" for macular degeneration, the word "menu" with 3 lines in front of it, then "search" with a symbol that represents a magnifying glass.

Have a topic you are interested in knowing more about? These are things you can do:

• Choose 'search' and enter a word or words
• Choose 'menu' and you will see a list of phrases including Community, Symptoms and Complications, Diagnosis and Testing, Treatment, and more. Select any of them and you'll find helpful articles.

By the way, when you see those 3 lines stacked up on a webpage, it means that if you select it, you'll get more options. Impress your friends by telling them it's called a "hamburger" icon!

If you are confused about the difference between our Facebook page and the website, check out this article.

Questions to ask when newly diagnosed with AMD

From my experience, these are the questions for which you really need answers:

• "What exactly do I have?"
  Most of the people I work with have age-related macular degeneration (AMD), but there are other forms of macular degeneration. You need to know exactly what form it is because that will tell you what your next steps should be.
• "How did you decide it was ____?"
  For example, a diagnosis of AMD may include the eye specialist mentioning drusen, which is not found in the other types of macular degeneration.
• "Is it both eyes or just one?"
  That can occur. If it's AMD, you can also have one eye in one stage, and the other eye in another stage.
• If it is AMD, "What stage is it?"
  The stages are early dry, intermediate dry, advanced dry and wet AMD. The 2 advanced stages are advanced dry AMD called geographic atrophy and wet AMD.
• "Do I need to have more tests?"
  The type and frequency of diagnostic testing depend on the stage of AMD. For those with other types of macular degeneration, the tests chosen may be the same as with AMD, but additional ones may be required.

There are no stupid questions

Don't be afraid to say, "I'm sorry, I don't understand." As a teacher, I always told my students that there were no stupid questions except for the ones they didn't ask.

Breathe. Try to be calm. I know that a lot of people become nervous or intimidated by medical professionals. The way I look at it is that they work for you – not the other way around. You deserve answers to your questions – you have a right to them.

Make a list ahead of time

One thing that I suggest is something I do before I'm in the office with a doctor. At the top of my list of questions, I make a rough outline of what I want to say when I first see him. For instance, I list what's new since the last exam.

This morning before I had an appointment with my GP (General Practitioner), I had the words 'medication change' and 'new pain' written down. You might have words like 'blurrier' or 'dry eyes.' It helps in case you get a little tongue-tied.

Ask for a copy of your test results

I also recommend that before you leave the office you ask if you can have a copy of any test results. If they don't have them then, you might ask if they will email them to you.

Some people (like my husband) will ask the doctor if it's okay to take a photo of a test result on a screen such as from an Optical Coherence Tomography (OCT). So far, no doctor has said, "No."

New AMD diagnosis questions

I hope that your next experience with your eye specialist is a positive one. Try to remember:

• If you didn't know what questions to ask when you got your diagnosis, you are not alone! The next appointment is your chance to remedy that.
• Make a list of questions to take with you.
• Educate yourself about the disease and the terms before you go.
• If you get nervous when you are with the eye specialist, remember that they work for you. You have a right to know what's going on with your eyes.
• It might help to plan what you'll say when you first see the doctor.
• There are no stupid questions except the ones you don't ask!

Best wishes for your next appointment.

Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat geographic atrophy (GA).