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Conflicting Diagnosis AMD or Pattern Dystrophy
I am 56 years old, and I was recently diagnosed with AMD, or Pattern Dystrophy. No family history or underlying health conditions.
In 2021, I was told that I have Drusen. That’s it drusen. Because I hadn’t been in for two years it was impossible to tell when it may have started. The doctor told me to take AREDs and we will keep an eye on it. No big deal, I was not made to think it was anything to worry about. The following year I was told the same thing, everything was stable. It is strange for me to go two years without an eye examination, than I realized it was during Covid. No one was seeing their doctors. At no point was I told I have early or any kind of AMD. This last appointment in June 2024, I heard the doctor tell the tech that it is soft drusen Macular. Ummm, I’ve never heard those words used before. What the heck is going on? The doctor turns to me and says. I am so surprised you have this. You are young and healthy. It's dry for now… Are you telling me I am going blind?? No…. This does not run in my family. I do not know one person with vision impairment or eye disease outside of the run of the mill glasses. I have no underlying health conditions with the exception that I am a former smoker. I quit approximately eight years ago, cold turkey. Quitting smoking is a way to limit a risk factor and I did it a long time before this diagnosis. I feel so ill-informed. Do you know how rare it is to be diagnosed with AMD under the age of 55? And according to them, I think, I’ve had it since I was 51/52.
I have always had excellent vision. 20/10, 20/20, 20/30, back to 20/25 (two different ophthalmologist showed 20/25). Apparently, it has nothing to do with AMD. I have some blurry vision that seems to come and go, and the Amsler grid shows it to be a pinch off with my right eye. I feel like my eyes are playing tricks on me sometimes because I am so upset over this. I feel like my life is over and it will all be just a memory. I won’t even know what I look like as I age, if my hair needs a touch up or if my clothes match. I have grandchildren I may never watch grow up. Anyway, the doctor told me she would recommend a retina specialist if I wanted. I found my own at the Wilmer Eye Institute Johns Hopkins Medicine. I had the records sent to him and that was the first time I saw “intermediate” AMD. I had a complete work up. I was so upset in his office. I thought it was time to buy a rancher, tell my job, tell my family… He told me it was not necessary to that and that my prognosis was 20-30 or more years. Nothing I have found on AMD supports that so I cried my eyes out for 6 weeks. I changed everything about my lifestyle, and I am taking the AREDS2. I lost probably 10lbs. After a few weeks of worrying myself to death I decided to reach out to the specialist via mychart to ask “Do I have AMD? If yes which stage and how long do you think I have had it? The response from the retina specialist “What you mostly have is called Pattern Dystrophy. It is a cousin to AMD but much slower and less severe”. Now the 20-30 or more years prognosis made sense. After researching, I find out there are different types. Which do I have? Once again, no one in my family has had this either. No one. I have spoken to the elders on both sides.
Why would I receive conflicting diagnoses? The Retina specialist has equipment to help differentiate between the two, right?
I called my primary Ophathalmologist to share the good news and she is less than thrilled. She says I have drusen and believes I have AMD and should get a third opinion. She says Pattern Dystrophy is rare… so is being diagnosed with AMD in your early 50s.
I just sent a few specific questions to my Retina Specialist without mentioning the other doctors comments. You would think a specialist at Johns Hopkins would just throw out there “most likely it is Pattern Dystrophy, 25-30 or more years prognosis” if he wasn’t sure.
I don’t know what to do or how to prepare for my future at this point. According to Google, which I have to stay of, AMD is like a 5-10 year prognosis with more severe consequences compared to Pattern Dystrophy that people can live with good vision for a lifetime.
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Hi!
It sounds like you are going through something similar that happened to me when I was diagnosed with Retinitis Pigmentosa at age 60. That is rare also. Most people get this at age 20. I did all the tests etc. they suggested and listened to how my vision was shrinking but it wasn't. It was the same as it's always been. Not perfect like yours because I have had glasses since I was 6 and I'm now 78. But my vision wasn't changing. It was the same as it has always been and 18 years later, it still is the same. I don't think I have Retinitis Pigmentosa and never did. But they did get a lot of money out of my insurance for a while. I just prayed about it and quit going to the eye doctors so often; just for a regular yearly check up and not to the ones that said I had Retinitis Pigmentosa.
Just pray to God about your eyes and tell him all of your concerns and fears. He will help you and make everything OK again. God always does. If you are still seeing good, then don't bother going to the doctors. Say your prayers and have faith. Everything will turn out fine. God made your eyes and he can fix them; if they need it and they may not need fixing. The doctors could be wrong.
I will say a prayer for you.
PML
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2 ReactionsHi,
Thank you for the information. It is so upsetting and scary to receive conflicting diagnoses. Unfortunately, I learned this week that my father had been diagnosed with AMD at the age of 84, not sure how long he may have had it before the diagnosis. and my 89 year old aunt, his sister, has had it for at least 10 years. I am very confused why this information has never been shared with me AND I am still confused why I would develop this at 25 to 30 years younger than most people. Here is my new dilemma. Yes, I learned AMD is in my genes but it is rare to be diagnosed before 55 years old, I told the doctors it does not run in my family because I believed it did not. Then I was diagnosed with most likely having a Pattern dystrophy which is also rare and does not run in my family (that I know of). Now what? I inform the retina specialist that I learned AMD does run in my family, not as young as I, but it does run in the family, will he change my diagnosis or will I still be in a whirlwind of sadness and confusion? The two diseases are similar, yet different.
Doesn't a specialist have special machines to distinguish between diseases? I should probably get a third opinion but I am petrified.
I am praying every single day. I pray for God to have mercy on me. I pray for him to please stop the progression of whatever it is I may have. I don't know anyone with any eye diseases at my age that I can talk to or get more information. Google only adds to the stress with worse case scenarios, How bad are things going to get for me, and how soon???
I feel so empty inside like I have a huge hole through the middle of my chest.
Please pray for me to make it through this. Thank you
PTL
I am recently diagnosed with intermediate dry AMD in both eyes. When or if the time comes for injections for wet AMD will you still see bending lines or will things look normal and will you have face recognition? I'm so afraid to not see my grand children's faces change or know if I am getting grey or what I look like older.
Also, in the event dry AMD goes to RA has anyone been given the new injections for dry? Same questions as above for the dry AMD to wet.
I'm so afraid. The comments I am receiving have been very helpful but I still have more to ask since this is so new.
Thank you,
PTL
Hi PTL,
You are doing the right thing by praying and continuing to pray! I will pray for you also. God is there for you and will make sure your eye problems all turn out right. Do you have some vision problems now or are the doctors just telling you that you have problems? If you can see good I would merely live your life and forget the eye doctors! Even if you have to cancel some appointments. After all, it's your eyes and your money that's paying for the appointments! You are in control. If your eyes start to have problems, then go back to the eye doctors. Just because your relatives had some eye problems doesn't necessarily mean you will have those problems. My grandmother died of breast cancer and I never had that.
Keep praying like you are doing and have faith. Put everything in God's hands and then wait for the miracles. Maybe even start reading the Bible again if you aren't already.
My husband died 3 weeks ago and I felt so lost. The insurance was lapsing, I wasn't sure of the exact amount of money I'd have between the pension and social security; (I was getting conflicting messages.) I had no prescription coverage, the refrigerator stopped working, the hall light switch quit working, a light bulb blew out in the bathroom and was stuck in the light and wouldn't come out! I just sat down and had a long talk with God and for a while, nothing happened. Then I found a new insurance with no charge except co-pays and prescription coverage. I finally got a final amount for the pension and social security and it's OK and livable. The refrigerator fixed itself but not until the repair guy came out and he charges $139. He wouldn't take a scent! I thought that was so nice! I live in a mobile home park and the manager came by and noticed I had no hall light. He fixed it for me and got the stuck light bulb out all for free. See? You just have to have faith and pray. It does work! Let God help you and also let him take care of the future. Besides, not as many people believe in God anymore like they used to. I think he enjoys hearing from those of us who still believe in him. God's probably lonely.
I wish you the best and I will continue to remember you in my prayers.
PML
My vision is good using both eyes. The right eye is a smidgen off when looking at the Amsler grid. The left seems okay. Although I can read without glasses my vision is 20/25 so I occasionally use reader +1.50. they're pretty low. The doctor says that has nothing to do with the my
diagnosis
I don't think I'll stop seeing the retina specialist because the biannual exams will help us to find any progression early so
treatment can begin and I'll keep very good vision for the rest of my life. I now believe it is AMD and not pattern Dystrophy because I now know two people in my family had/has AMD. I believe my age is what made the specialist think it was something different.ill be meeting him again in Dec so I'm sure he'll agree.
I do believe my prayers to St Lucy the patron saint of eye disease guided me to the Mayo clinic site. I have received so much positivity and hope. Google had me feeling like the life I know was over. I felt dead inside, but now I have hope.
I am very sorry you lost your husband. Please accept my deepest condolences. I believe prayer is very powerful. And I believe that is why you were able to get the things to our needed because of prayer. I hope everything continues on the right path for you.
Do you have kids? Do they help out as well.
I'm meeting with our parish Priest Wednesday morning. I want him to bless my St Lucy necklace that I just bought.
Thank for praying for me. Keep praying! Prayer is powerful. 🙏
Prayer is powerful!