I am losing my eyesight to a disease called MacTel, or Idiopathic Juxtafoveal Macular Telangiectasia. My camera sees more than I do.
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.
Read More From Patientslounge
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.
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.
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.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2012 moonlake
Lin Fischer on April 06, 2019:
I too have Mac Tel type 2. I found out a few months ago. Have gotten three shots in my right eye so far and it has helped bleeding behind the eye stop. My left eye still good. Right eye not too bad yet. Thanks for sharing.
L.miller on January 18, 2019:
I too have mac tell 2 for the last 6 years was diagnosed with a macular hole and they wouldnt fix it. I took myself to a retina specialist 3 years ago and mac tel was diagnosed. They say they cant help me at all. I started areds eye vitamins and the progression has slowed. Left eye much worse than the right. Good luck to all who has this.
Pat pellegrino on November 15, 2017:
These commenta have been helpful. In 2012 I was diagnosed with Mac tel at the Wilmer Eye Institute. When I returned home to Northern New York, my opthomologist shrugged off the Mac tel diagnosis and insisted I have AMD. NOV 13 , 2017 I had an appt at the Duke Eye Institute where Dr Mattu confirmed I have Mac tel and it is now in both eyes. With my readers (250) on, the Amsler grid looks normal, but without my glasses I see blurred spots and my depth perception is off. I can no longer see street signs or large advertising signs on the highway. When I return to Raleigh in the spring I will get an appt with a “low vision specialist”, who Will hopefully help me function for a few more years.
Kat on July 31, 2017:
I was diagnosed with JFT six years ago. I have eye injections of Eylea every six weeks, and I have kept my disease in check, and have had improvement in both eyes since first diagnosed. If you have not seen a retina specialist, that is where you need to start. Then you need to have a discussion about the injections. I currently have 25/20 vision in both eyes, with glasses.
Just wanted to let those of you with this diagnosis, there is hope. No cure, but there is treatment out there.
moonlake (author) from America on April 01, 2016:
LaDonya, Thank you so much for stopping by and telling your story. I'm sure your information will help anyone who stops by this hub. I have been experiencing a blind spot in the center of my left eye. It started about two weeks ago guess I'm going to have to go in and get it checked. It would happen right now when I am so busy packing for a move.
LaDonya on April 01, 2016:
Three years ago I was diagnosed with MacTel 2 (MacTel in both eyes) - the liquid form. Within a year I was disabled as "legally blind" which does not follow the little know information they have on it as taking around 10 years to lose your sight levels. My eyes continue to progressively worsen, and recently my diagnoses has been changed to MacTel 3. A rare condition within the rare condition. I wanted to share because MacTel 2 is not this aggressive, and if your eyes break at a rapid pace and you notice blood or an orange tinge in the liquid, be sure to tell your doctor. The MacTel 2 condition has no good treatment - avastin helps some but overall it is not a significant enough improvement to warrant that intervention - but if your MacTel 2 warps into MacTel 3 - the shots can help the extreme level of fluid left by the breaking and reduce leftover scarring by relieving some of the liquid, however temporarily, so every 6 week shots are best with MacTel 3. I did not know I had MacTel 3 for some time, just thought it was part of the MacTel 2 progression to break like that, so I have irreversible scarring that could have been lessened somewhat by a shot regime. Make sure you check with your doctor first sign of changes, even if you have been told there is no good treatment, known cause or cure. MacTel 2 can turn into MacTel 3 very rapidly. I have an excellent specialist - ranked #1 in USA and #3 worldwide on this disease. I use a big screen tv as a monitor and have 15% central left in my left eye only now. It can change on you quickly and even under the best of care can be seen as MacTel 2 until the excessive breakage begins. They are working on better treatments and the known cause and a cure, so stay hopeful! I hope this helps someone. Blessings!
moonlake (author) from America on March 31, 2016:
Mary, I'm sorry to hear you have Mactel. I wish I could give you more information on it. My doctors are not telling me much just stronger glasses. I have not been able to think about it much in the last two years because of things going on in my life. I'm moving and will be closer to another clinic and hope I can find out more. I have noticed a larger spot in the center of my left eye. I want to find out if that is another change. There is a group on Facebook maybe that will help you. https://www.facebook.com/TheMactelGroup
Mary on March 31, 2016:
Hi. I just found out my diagnosis of Mac Tel 2 March 30. 2016. I had been having problems since last Feb. and have been from eye Dr. to Neurologist, to family Dr. back to Neurologist and eye Dr. and finally a retinal specialist who diagnosed me. I am floored to say the least. I have vision loss in both corners of my eyes, right more than left. I could describe it more but I am sure you know. I have been searching for discussion boards on the disease to see what treatment others have had/ or getting. Each one I find has no comments for years or months. Am I to believe that is it? Nothing can be done? All I can do is sit and cry because I have so much living and seeing to do. The information I find is varied. I just would like to talk to someone with this disease to maybe get a better understanding. I feel lost.
moonlake (author) from America on July 30, 2015:
Vinayaga, sorry to hear you have MacTel it's an awful disease to have. I wish you luck with it. Maybe doctors will figure out something. Thank you for stopping by my hub.
Vinayaga on July 30, 2015:
Hi Moon lake
I have been diagnosed with Mac tel last month.I am reading lots of article.My doctor also told me that there is no treatment for this.I am planning to get a second opinion but not expecting much. I love my job. I got 2 little kids. I am worried.I share your pain
moonlake (author) from America on June 12, 2015:
jill, Thank you for stopping by. I'm sorry to hear you have Mactel. It's awful to live with. I went to the doctor yesterday knowing my right eye was worse. He said my catracts in my right eye are worse but not ready to be removed. He increased my prescription and he said he wanted me to get polycarbonate lenses. It's safer he said and it would help keep my better right eye safer and my glasses would weigh so much. They keep asking me about diabetes but I don't have it and I have never had high blood pressure. I agree with you, the reading and looking up, everything looks blurry.
jill on June 12, 2015:
I thank you so much for the detail you have given on the symptoms. I was diagnosed with mactel 3 years ago after being told I had macular degeneration for 12 years. I saw a new retinal specialist after mine retired. The Mactel diagnosis was confirmed by a noted retinal specialist at the Kresge Eye Institute. I am now part of the Mactel project in Ann Arbor, Mi. Just this week my new retinal specialist told me he is guessing that the distance bluriness I am experiencing may be due to cataracts and that I might consider having them removed.
I want to thank you for your blog as I have never understood what the progression of the symptoms is. I started having problems seeing clearly at a distance down the freeway some 10 years ago. Now the bluriness is at about 300 feet on the freeway. If reading for more than 5 minutes, when I look up, everything is blurry and it takes a long time for my eyes to readjust. They tell me this is due to dry eye and a corneal dystrophy. I am 66 and have never had diabetes or high blood pressure.
Claudia Zahn on January 17, 2014:
I also have Mac Tel type 2. Dxed in Oct. 2012
Please join us on this site of people all over the world that have MacTel
You will be glad you did!
Temple, NH USA
moonlake (author) from America on November 29, 2013:
FlourishAnyway, Your right I do need to go to someone that understand this diease more. Thanks so much for your concern and prayers and thanks for stopping by.
FlourishAnyway from USA on November 26, 2013:
I am sorry, moonlake, for the stress and pain that this is so obviously causing you. Although I do not have the same condition that you have, I did lose the eyesight in my left eye due to MS completely about 10 years ago (although it eventually came back). I did not know, however, through the ordeal whether it was permanent or whether the other eye would be next. The terror and physical pain that I went through at the time were off the charts. The color red was very physically painful to me. I started seeing in black and white. My visual field narrowed then went dark. I had stabbing pains in my eye and even though I was blind in that eye in the dark there was a light source that felt like it was internal to my head. (The neurologist said it was probably neurons firing.) I felt isolated, like no one could who had their vision could understand. Please get a good doctor, even if you have to have someone take you a good distance to get to one. Aren't you in NC? If so, try Duke? How about flying to the Cleveland Clinic for good advice since you got a turd for a doctor at Mayo? You are in my thoughts and prayers.
moonlake (author) from America on November 26, 2013:
Indian Chef, Thank you I appreciate your concern. I hope something good happens soon too. Thanks for stopping by and for the vote.
Indian Chef from New Delhi India on November 22, 2013:
Moonlake I am really sorry about your eye sight and the disease you are suffering from. I hope soon someone finds a good cure for this . Voting it up.
moonlake (author) from America on November 14, 2013:
CraftytotheCore, Thank you, I can tell my eyes are worse. I use to at least open my left eye when I wasn't writing or reading but I seem to be keeping it closed more now and I get so tired doing that. I appreciate you coming by.
CraftytotheCore on November 14, 2013:
I'm so sorry you have to go through this. My uncle has an eye disease. He gets injections in his eyes. I can't imagine that.
I can totally relate to what you said about the doctor having the attitude right off the bat that you knew he would not help. I've had my share of those recently too. Such a shame.
moonlake (author) from America on November 05, 2013:
Au fait, We have had to deal with Marshfield Clinic before and I am not crazy about them. We go to Wausau for most everything. I think for my eyes I may have to go to Madison. I have heard of a doctor there. My eyes have gotten worse. I often miss things. Thanks so much for prayers. Thank you for the vote, pin and share.
C E Clark from North Texas on November 05, 2013:
I'm so sorry to read about this issue you have with your eyes. Have you checked with the Marshfield Clinic? I haven't been up there in years, but they always used to be the go-to place for unusual health issues. Like some of your other commenters, I too pray that a solution will come along soon that will save your vision.
Voted up, useful, interesting, pinned to my 'Health' board, and will share.
moonlake (author) from America on September 23, 2013:
penny cranham, No time scale each person will lose their eye sight on their own time scale some faster than others.
penny cranham on September 22, 2013:
is there any time scale for mac tel2
moonlake (author) from America on July 21, 2013:
blujayne, It sounds like we do have lots in common. I just hate that not much can be done attidude but all eye doctors seem to have that. Thanks so much for stopping by and leaving a comment.
blujayne on July 15, 2013:
I am losing my eyesight to MacTel as well. I just learned this about three months ago after a very rapid decline in my vision. I found you while researching the idea of a second opinion. My eye doctor treated me for 3 months with Avastin injections and now has a kind of meh...not much can be done outlook. I love my camera too. It sounds like we have tons in common.
moonlake (author) from America on April 02, 2013:
DDE, Thank for stopping by. It does sound like you need to get your eye checked good luck I hope it won't be anything serious.
Devika Primić from Dubrovnik, Croatia on April 02, 2013:
An interesting piece of information something I never heard of but also have a it of a weak vision in my left eye must have it checked, and the more opinions you have the more you can consider your options.
moonlake (author) from America on March 11, 2013:
Tom66, Thank you for all this information I will have check into it. I appreciate you stopping by and leaving your informative comment.
Tom66 on March 11, 2013:
I was diagnosed MacTel1 4 months ago and searched around for more informations.
MacTel-Project published the 5 years follow-up and confirmed that oxidative stress could cause the symptoms.
Estradiol is known to be neuron-protective and anti-oxidant, you should maybe ask your doctor to check your estrogen levels.
Moreover MacTel2 is completely unknown in Japan, MacTel1 start only after 60 y.o. (usually 40 y.o.).
Japanese people consume a lot of Soy products containing a phyto-estrogen: Genistein.
Maybe the same effects as Estradiol...
1) Anti-oxidative diet (remove free sugar!)
2) Soy products (soy milk, soy yogurt, tofu, miso soup)
3) Estradiol (eye drops?)
And finally don't give up !!!
moonlake (author) from America on March 08, 2013:
LadyFiddler, Thank you for the information will have to check that out. Thanks so much for stopping by and leaving a comment.
Joanna Chandler from On Planet Earth on March 08, 2013:
hmmm i am very sorry to hear about this cruel disease that can take your whole eye sight. I too wear glasses 13yrs now i am just 25yrs old and my eyes are dim i won't ever like to lose my sight or hear of people who do just makes it even more sad.
My friend husband was having some eye problems and she has this medicine book of various home remedies which there is a Bragg's apple cider vinegar cure you can google it to know how to mix it. Only the braggs vinegar eh don't try heinz and they'll tell you what to do okay. I myself tried it and it will burn for a few seconds but close your eyes tightly with you put the drops after your eyes will feel very fresh and clean.
My friend husband is seeing much better also a dog and a man eye was cured from cataracs from the braggs you can do your research.
please try it at least in one eye first
moonlake (author) from America on February 23, 2013:
rslj123, Thank you for stopping by. You are the first person that I have heard any say that they had laser treatment.
I'm sorry to hear about your eyes. I would bery much appreciate you letting me know how it goes with your eyes. At least the doctors are talking about it mine won't even do that.
rslj123 on February 23, 2013:
Hi. I'm really glad to find this blog. I was diagnosed with mactel 11 years ago when I still lived in the UK. I had cold laser treatment and the eye has been stable since the treatment although i lost some central vision which could not be restored. Since the end of January 2013, the other eye is affected and affects all of central vision with the same symptoms you describe. I've seen 3 specialists up to now, and it's looks as if they going to try cold laser again (they're still deciding). I'll let you know how I get on. But I agree with the other comments, try different doctors and and find a good specialist.
moonlake (author) from America on February 18, 2013:
rajan jolly, Each day I can tell it's getting worse. I now have trouble seeing things on the TV. I'm going to keep trying to find something that can be done. Thanks so much for stopping by and leaving a comment.
Rajan Singh Jolly from From Mumbai, presently in Jalandhar, INDIA. on February 17, 2013:
Like onlygrace, this is the first time I'm learning about this eye disease. I can understand how difficult it is to know there is no treatment like your doc says. But docs do have different experiences and maybe you will find one who has an answer to your problem. I wish you luck and stay positive.
moonlake (author) from America on January 16, 2013:
onlygrace, Thanks for stopping by and for the encouraging words.
onlygrace on January 16, 2013:
It's my first time hearing the term "mactel disease". I know it's hard to lose an eyesight. Be strong, don't give up, there must be a cure for your disease.
moonlake (author) from America on December 12, 2012:
vespawoolf, I think you're right about the research. I'm also going to try and find a better doctor here. The clinic I went to was pretty upset when I canceled all appointments with them. A few days later I got a letter from my retinal doctor saying he was moving. Makes me wonder if I wasn't the only one that didn't like him.
Vespa Woolf from Peru, South America on December 12, 2012:
I hope all goes well. I just think sometimes it takes research and perseverance to find the right doctor, but he's out there!
moonlake (author) from America on December 12, 2012:
vespawoolf, I thought I heard about one at the UW Wisconsin so I'm going to check it out. When holidays are over I will start looking for someone. Thanks so much for stopping back I appreciate your concern.
Vespa Woolf from Peru, South America on December 12, 2012:
I really believe there's a doctor out there who can help! It's just finding him that's difficult, but I will certainly let you know if I hear of one. Please don't lose hope.
moonlake (author) from America on December 12, 2012:
vespawoolf, My trip to Mayo was pretty useless. I had a doctor that came in with an attitude and I could see he was not going to help. He said I would never go blind but would not be able to drive or read. If I could just find a doctor willing to remove the cataracts that would help so much. If the cataracts stay I will be blind.
Vespa Woolf from Peru, South America on December 11, 2012:
My goodness, I'm so sorry you're losing your eyesight! I know you enjoy beauty and it must be very difficult to have a disease for which there is no cure. Medical treatments are always improving, though, so I think there's hope that something could be found to at least slow down the digression of your vision. My heart goes out to you.
moonlake (author) from America on November 12, 2012:
wilderness, Thank you for stopping by and leaving a comment. I will keep looking maybe after holidays and if the world is going to end on December 21, 2012 why bother. I'm not going through all those test if I don't have to. Haha
Dan Harmon from Boise, Idaho on November 11, 2012:
So sorry to hear of your mac tel. From my fight with cataracts, and my mother's with macular degeneration, I understand what it means to lose your sight and sympathize greatly with you fight.
Keep looking, moonlake - technology and knowledge change all the time. Something could always change in either area, but you can't depend on any one doctor to be aware of everything even in their own speciality.
moonlake (author) from America on September 03, 2012:
coffeegginmyrice, Thank you so much for stopping by and leaving a comment. I'm hoping my sight will get better but I don't think it will. Who knows maybe they will come up with a cure in my lifetime. I appreciate you stopping by.
Marites Mabugat-Simbajon from Toronto, Ontario on September 03, 2012:
You have Visions- these are the inner vision and your vision capturing the wonder of life and sharing to all of us your talents here. Keep up your hopes and pray to heal your vision to perfection. Take good care, moonlake!