Losing My Eyesight to MacTel—Juxtafoveal Macular Telangiectasia
MacTel Is Taking My Sight
I'm losing my eyesight to a disease called MacTel, also known as Idiopathic Juxtafoveal Macular Telangiectasia. For years, I have had problems with my eyesight. Mostly, just little problems; nothing I couldn't live with.
I started to notice, however, that even with my glasses on I was closing one eye to read or look at the computer.
My mother thinks my computer caused my bad eyesight! It didn't. I’m starting to notice I’m not seeing things at a distance very well. Mailboxes and signs look like kids on bikes to me. The birds land in the feeder, and I can’t tell what they are anymore unless I go by color or general size. I said to my husband, "Look at the bird." He said, "It's a chipmunk."
My main symptom is blurred vision. Straight lines appear wavy or crooked. I can't read cans or the back of boxes anymore. Any kind of small print is just impossible. I notice now my eyes get a tired feeling easily. I have trouble with real bright colors — they hurt my eyes. Some days my eyes are better than others. If my eyesight is suddenly gone one morning, I'm supposed to call the doctor. Duh!
My camera sees more than I do. I always have it on the table, and sometimes I use it to tell what things are. I have magnifying glasses all over the house. I now have trouble reading regular books, but my Nook works great. It lights up, and I can make the fonts larger
This is not macular degeneration. Many people think it is.
I hate the thought of losing my eyesight, but I think one morning I may wake up and it will be gone. The doctor wrote the name of my condition for me, and this is what he wrote: MacTel, or Juxtafoveal Telangiectasia. I asked him for information, but he had none to give me. He really has not given me any hope of anything being done for this disease. I have had all sorts of tests done.
I had to do some research on the internet and, believe me, there is not much on MacTel. It causes central vision loss in the eyes. It’s sort of a rare disease. The way I understand it, the blood vessels leak blood or clear fluid into the fovea. It makes things look distorted.
It can cause paracentral scotomas (blind spots).
The doctor told me there was no treatment, but I found out that laser treatments or cryotherapy injections can be done. The doctor keeps telling me I have this from diabetes. I think if anything has caused it, it would be my heart disease, which I've had for 27 years.
Yet, I don't take medication for diabetes. I have also read they don't know what causes this disease.
A friend of mine wrote her eye doctor in Florida, and he said they should be doing more for me than they are. He mentioned all of the above items as being potentially helpful.
Eye Check Ups
I hate going for my eye checkups. Some days my eyes are better than other days, and if I go on a good day when I’m going for my glasses, I worry they will not give me strong-enough glasses.
Last week I went for my eye checkup and told the lady testing my eyes I could only see the first two letters on the chart. I told her if I turn my head almost upside down I could see the other letters. She said, “Well, do what you have to do.” I thought, is she kidding? I can’t wear my glasses upside down or keep my head upside down. I have cataracts that need to be removed, and I'm sure I could see much better if they were just removed. But because of my MacTel condition they won't remove them. I know I can’t bring back my eyes, but I wish I could stop them from getting worse.
The Amsler recording chart to me looks all wiggly.
Can I Wear My Camera?
I wish I could wear my camera against my eyes all the time. It works great I see so much better. I can’t use the little box I have to use the eye hole to take pictures and now I'm having trouble telling if the picture I'm taking is blurry or not. I would hate to miss all the beauty I see all around me, like the pictures I took yesterday and this morning in the yard.
If you see spaces in my writing, please let me know because this is what I don't see. I type fast and sometimes type and put in spaces by accident and when I look and reread my hub I don't see those spaces.
I think it's pretty much time for me to check with a different doctor.
Our yard today was full of monarch butterflies. I would hate to never see them again.
When I told my sister-in-law how I had to keep one eye closed. She said, "Oh no, you're going to get wrinkles on one side of your face." My sister-in-law is a sweet and nice person. I thought it was so funny and typical of her. I wish I had her talent to make people laugh.
- Blurred vision for a very long time
- Sunlight hurts my eyes — really hurts them. I can't see much of anything in the sun. While walking around the garden area, I couldn't tell what the flowers were this didn't happen to me last year. I don't have this problem if I have sunglasses on.
- Objects look far off when they're actually really close
- I'm also now getting haziness over my eyes, and I'm not sure if it's MacTel or something else.
Now, I don't know if all these symptoms have to do with MacTel, but that is what I have noticed.
I keep my left eye closed while reading or watching TV. My face gets so sore from doing this. If I open my left eye it makes my eyesight blurry, but if I close it my right eye is so much better. It allows me to see without the interference of the left eye.
My left eye is the worst. When I close my right eye and look at the highway with my left eye the highway looks like there's an earthquake happening. You've seen it on TV when there's an earthquake and the road gets all wavy. This is the way the road looks to me. I would hate to have to give up driving.
When signing something it takes awhile for my eyes to focus. People do get inpatient with me.
If you had to lose something, would you rather it be your hearing or your sight?
Amsler recording chart
Just an update for 2013. I did go to Mayo clinic to get my eyes checked. The minute the doctor walked in the room I knew I had picked the wrong doctor his attitude right away showed he wasn't going to do a thing for me. He went just by what was on my record and didn't do any test of his own. He did tell me I should be able to have cataracts removed but didn't seem to want to be the one to do it. He said I would never go blind but would not be able to drive or read. Well, how bad is it about as bad as it can get. He acted like it was nothing. I'm grateful I won't be completely blind.
When I got home the doctor I had here moved so now I have no doctor. I wonder if they fired him. I have to find someone so I'm still looking around.
I have trouble reading things like pages from Family Video below. I can see the first page but have to get a magnifying glass for the second page.
I ran into a friend recently and she put her finger on the lens of my glasses thinking it was falling out. It wasn't they are so thick now they look like they're falling out of my glasses.
Our kids are grown. They don't ask questions about my eyesight, and they look at me like they don't believe me when I mention it. I will only be able to get around our home and the yard, but will not be able to go outside the home and drive or be able to read.
It's 2015 now. I just recently went to the eye doctor. My right eye was worse, mostly from cataracts. They are not ready to remove them. I knew my eyes were worse, but this last year, I have not had enough time to worry about it.
Now 2018 cataracts have been removed. My glasses are not so thick now. My MacTel has gotten worse but still able to drive.
- Inspire MacTel Blog
Inspire connects patients, families, friends, caregivers and health professionals for health and wellness support. Connect with others who know what you're going through.
- The MacTel Project home page
The retina “takes the picture” of objects you look at and sends the message to the brain. The fovea is the central portion of the retina that is responsible for sharp reading vision. In JFT the tiny foveal blood vessels become irregular and dilated.
- Macular Telangiectasia - Eye Disease - MacTel
Macular telangiectasia is an eye condition that affects the macula, possibly causing loss of central vision.
Questions & Answers
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