I have now been seen by a specialist and diagnosed so wanted to give you an update. I have been diagnosed with Pathological Myopia which has resulted in PVD, rugby shaped eyes (not sure of the scientific word for this), and macular degeneration - although the Dr said that Pathological Myopia may also be called various other things including Macular Degeneration??
Anyway, it is safe to say I’m devastated. I initially had false hope as before dilating my pupils, the Dr said ‘your scan looks completely normal!’ However, after dilating and diagnosing me it turns out that he meant ‘my scan is normal for someone of my prescription’. He told me that these changes would not be normal for himself or for my dad; not the most comfort.
He said that the macular damage could become worse by the time I’m 30,40,50,60 - there is just no telling.
Because of the PVD he also said I’m to avoid heavy exercise and ‘bending’ (?) but ‘bending’ is particularly difficult to avoid when I work full time as a waitress. Does anyone know if I would still be able to run? Or would that class as heavy exercise?
So now I guess I’m after everyone’s tips on slowing the progress of my conditions and how to beat the depression that comes with this kind of diagnosis. I had not started on AREDS2 prior to diagnosis simply because I had read that you shouldn’t take them unless you have the condition. Can anyone please advise where I can get AREDS2 from? Online or in shop? My Dr suggested MacuSheild - are these the same as AREDS2 or can I take both? Does anyone have any other tips on how to slow progression?
The only thing keeping me going at the moment is knowing that hopefully one day treatment for this will be available. My uncle was 13 when he started going deaf and it was only 5/6 years ago (when he was in his late 40s) that a cochlear implant was made available to him, and he now lives a similar quality of life to that of a person without a hearing disability, so I can only hope that one day all of us will see as successful a treatment 😔 otherwise I don’t know wht I will do as I feel like my quality life is going to be taken away from me and that just doesn’t sound like the kind of future i hope for.
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Areds2 is different to macushield The first is specifically developed for md and has more ingredients, I don't know if it shares any with macushield which has just 3 and is a more general eye health supplement (although is the best of those). Others here will know.
The macular society helpline should be able to give you expert advice on all aspects of your conditions. Or ring your clinic/consultant's secretary and ask.
Sorry I can't help more, I have a different condition, but there's bound to be someone here who can share their insight.
Try not to worry, you can't change what is, you don't worry about being run over crossing the road and you need to find a way to put this fear into the same box. Easier said than done I know! I can recommend counselling. Ask your gp. Sight problems are known to be akin to bereavement emotionally so be kind to yourself.
Drymd is usually very slow acting and as you say, things are being developed which one day might help. Focus on what you have, not what you might not.
Amazon UK has [B&L PreserVision AREDS2 - £90.00] twin pak of 240 capsules total (120 ea pak). If you take 2 a day, that's a 4 month supply. If you take 1 a day, that's an 8 month supply. Also, eBay UK, has them even cheaper.
On U.S. television, AREDS2 are heavily advertised to middle-aged adults to prevent AMD. They are vitamins for your eyes and you already have eye problems so take them, even if only 1 a day.
Leaning over a table to place or remove dishes is not bending. Bending over to pick up a penny from the floor is. For that, just flex your knees and squat down keeping your trunk perpendicular to the floor.
Get an Amsler Grid or print one off the internet and tape it to your wall. Using this for each eye will tell you if you have developed wetAMD. If that happens, you must get to eye emergency ASAP. However, that could be many years away if at all.
Running can be considered heavy exercise if you sweat. Brisk walking might be better and easier on your joints. Anyways, search "heavy exercise" to be sure.
After a while, you'll overcome your depression and decide to SAVE your vision by being proactive. That means dedicating yourself to a healthy eye diet and lifestyle. Avoid junk food, ciggies, etc. and check out these terrific Mac Society recommendations which are heavy on veggies:
Hello BLW95 - knowing is better than not knowing. I was sure you were a bloke! Be assured that you can help yourself. Start AREDS2 immediately - there are products that have the same formulation (Google AREDS2 for the exact formulation as determined by the American Eye Institute). The original was Bosch and Lomb's Preservision. I live in France so don't know any other than the French Olfamac Plus, which I use. I buy it from the Pharmacie at €42 for 60 gelules (2 months supply). I don't trust the Internet, I'm afraid. Some are dosed for 1 a day, with food. Some are dosed for 2 a day. Take the recommended dose. Taking less is a waste of money, as is taking more. If you smoke - STOP! Avoid junk food and processed meats. You will find some things seem to affect vision the following day (in my case, red meat and hard cheeses) so be guided by your own experience - not everyone is the same. Avoid effort as far as possible - if running is an effort, avoid it. Foods high in anti-oxidants are good, which happily includes RED wine (not white - rosé is half good). In moderation! (there has to be a snag!).' Protect your eyes from blue light - you may need glasses for myopia? Make sure they're coated against blue light. I also wear 'fitover' amber night-driving glasses a la Hollywood - they help with contrast. Reading may be easier on computers etc: using the built-in 'low vision' mode - white on black rather than black on white. It all helps!
Research into AMD continues, and you're young enough to benefit from the results of that. I can't help with the depression side - I'm blessed with the ability to accept what is, and not rail against Fate. It does help to count your blessings, though. Really. Quality of life is largely what you make it yourself. Work on that. Courage!
I have the same eye condition as you . I had always found it strange that my eyes continued to get worse year after year but no optician told me I had pathological myopia until 4 years ago age 35 I had a bleed in my left eye and lost my central vision .
I was devastated . I sat in moorfields eye clinic surrounded my people at least 30 years my senior . When I asked the doctor what I could do to save my right eye she said nothing I burst into tears .
I fell into a deep depression and was suicidal .
The RNIB did give me some counselling but unless you tell me that I’m going to be cured then it’s of no help ...
4 years on I’m still working and driving . I take vision defender which is the AREDs 2 . I read a lot about self healing and have Reiki .
I make sure I wear sunglasses to protect my eyes.
I still do dance fitness and run and horse ride . I guess I can still live my life normally at the mo so I will .
Every day the fear of loosing my sight crosses my mind but I try and not dwell on it . Like you I just hope some sort of treatment can be found .
Sorry I’ve probably just depressed you more .
But everyone is different and you may not have any eye problems for another 20 years so live life whilst you can .
Hi! I'm so sorry to hear this. I recognize myself in your story. I was first told (kind of) when I was 29 when I went to update my prescription. They said I had atrophic holes and were at risk for detachments, that was that. I came home and started googling, but still didnt realize what it was that I actually had. I am 33 now and in august last year I was unlucky enough to suffer a blow to my left eye, no detachment luckily, I was blind in that eye briefly, I can see again but cannot read with that eye. I learned from the reports that I have staphylomata, lacqueur cracks, lattice degeneration, peripapillary atrophy, very thin choroids and drusen. But still nobody told me any of this or explained what was happening to me, had I not read the reports, I still would not know and understand. A few weaks ago I was also diagnosed with nuclear cataracts in both eyes. I feel so alone and helpless.
Sorry just to add . I would recommend calling and becoming a member of the Macular society they will send you lots of useful information as well as keeping you up-to date with scientific progress .
I don't think AREDS will be of any more help to you than a person without sight problems. Your problem is not one of oxidative damage, but of damage caused by the stretched shape of the retina. You can read confirmation of this here:
Take lutein and the rest of it by all means, but I suggest buying the components of AREDS individually and look into gamma E rather than the more alpha E biased AREDS.
I am sorry to hear of your diagnosis, it’s a very difficult thing to hear. There is lots of very good advice above which I won’t repeat. The Macular Society and the RNIB (which I only recently found out provides info around all eye conditions and isn’t just for blind people) have good leaflets on pathological myopia and myopic macular degeneration.
Your doctor is right that no one can predict. I have myopic degeneration too and like Bfree above have bleeds, myopic CNV which is similar to wet AMD. The positive is that only 5% of people with myopic degeneration eventually have these (95% don’t) and the progress of the underlying condition, is much, much slower. E.g. a friend who has the same diagnosis drove until she retired. I think I was luckier than you in that despite a ragged eye history (congenital cataracts, high myopia, retinal detachments and later glaucoma) no one ever told me that I was at risk of myopic macular degeneration. So I didn’t know it existed until my late forties.
Your post made me reflect on how afraid I was at the time (8 years ago) worried about work, independence etc and my heart goes out to you. 8 years later I am still at work, and don’t think about it as much. I don’t think that my life is worse than anyone else’s, or much different really. The Macular Society runs working age groups for younger people affected by these conditions which you may find helpful. Take care and be kind to yourself. 🌷
I am a medical student in the US a few months from graduation. I have had a tiny bleed in my eye over a year ago and still see 20/20. I know it sucks to have a diagnosis at a young age but you can beat it as you go. The fact is everyone gets something. A lot of young people you think are “normal” have heart conditions, lung problems, GI problems etc rarely if ever have I seen any patient in a clinic no matter the age without disease. It’s extremely rare. Next I am only sure the doctor is worried about exercise due to your myopia. People with macular degeneration can exercise all they want. They are worried the bending or lifting will stretch the eye more and rip the retina off essentially which you are at a higher risk for. If you read your wet md chances not that high like mine were it’s rare I ever had a bleed which was idiopathic. Stay strong.
My brother and I both have Myopic degeneration. He managed to work until his upper 50’s. He had severe irreparable retina tears along with bleeds eventually causing him to be legally blind. Yet he is not totally blind and gets around fairly well. I have some wavy lines on one eye but the other eye takes over so I still work and drive. It is so frustrating that no one can tell you when or if your vision will greatly deteriorate. I think in recent years that has kept me from putting off things I want to do like going on a mission trip to Africa, a cruise to Alaska and spending lots of time with my grandkids. My daughter in law is a research scientist at a large university doing much vision and eye research. There is much about which to be hopeful. Live full and have faith!
I have pathological myopia, though I think the term degenerative myopia is often preferred
To pick up a few points, there is no real way of telling that myopia will be degenerative until degeneration occurs,, those with high myopia (correction of more than 6 diopters, though they used to say 8) and having myopia due to a ling axis eyeball (the rugby ball shaped eye) are more likely to develop it. Some people (my father for example) can have high myopia without the degeneration.
There has been very little research on myopic macular disease (MMD, compared to the far more common age related macular degeneration (AMD) and the AREDS studies relate to AMD, not MMD, Having said which, I do take a supplement, (MacuSave) on the grounds that every little help.. Even the wet and dry degeneration behaves rather differently in MMD than in AMD, according to my ophthalmologist
On the plus side, I had sudden loss of vision in my right eye in my early 30s, due to a bleed which left me with scarring, and my eyes did nothing interesting for over 20 years after that, it isn't necessarily a rapid or continuous progression, and there is more they can do now to sustain vision than there was then (1989)
I assume you are in the UK, do contact the Macular Society, the best way to start is by phone
BLW95 - being close to 80 years old I have a philosophy. My episodes of macular degeneration which resulted in impaired vision - both came on after trips I took which brought on episodes of severe constipation. Each time resulted in straining to defecate. I firmly believe that the straining resulted in my problem. For that reason I take Metamucil daily and keep on a regular bowel regimen with no straining. I could be all wrong on this but it seems to be coincidental with not straining to lift heavy weights which my doctor also advised me to avoid. Just a thought - certainly unproven but worth the effort each day.
I take AREDS2 daily - I get the prescription from my ophthalmologist at a cheaper rate than over-the-counter (they are called FOCUS Select).
With the treatments I receive my condition has not worsened so keep at it and I suspect you will do very well.
I’m so sorry to hear this! I hope you are coping well! I’m personally going through some of the same issues and i’m so terrified. did you have ongoing flashes before you were diagnosed with pvd and how was your prescription at the time? I’m in my twenties
Hi michellenavarn, don't know if you're aware of the Macular Society website and helpline or their Working Age FB page but both are worth checking out for support as well as this forum. Sending you a hug x
Hi Michelle! I completely forgot I ever made this thread!
So what I’d written above ended up being a misdiagnosis!!
Yes I had flashes. They eventually went away though and I was told a couple months later I no longer had PVD. My prescription at the time was about -6.50 (bad eye) and -7.00 (good eye); my prescription is now -7.50 (bad eye) and -8.00 (good eye) in contact lenses, but I wear a stronger prescription in my glasses.
After posting the above (I think it was about November time), I ended up rapidly losing vision and about six weeks after I wrote the above I struggled to see centrally with the affected eye. Lines had become wavy too so I ended up going back and getting referred again to a different hospital. Long story short, I actually ended up with a different diagnosis - the correct one!! - and I actually have a condition called Punctate Inner Choroidopathy (PIC), a very rare autoimmune condition that causes inflammation at the back of the eye. Because of this new diagnosis I was able to start treatment and I have recovered a lot of vision. I still have some blind spots, blurring and distortions but I can read again with that eye.
I completely understand how you feel; I constantly feel so scared and depressed, losing eye sight is terrifying. I am 24 so in a very similar position to you! It’s extra hard as vision problems are invisible to everyone else and very isolating as others don’t understand or see how we see.
How is your sight? Have you had a diagnosis?
It’s really important that you feel comfortable and happy with the care you are receiving. Don’t be afraid to seek out a second opinion if you aren’t happy with your care/diagnosis; even if the initial diagnosis is correct but you’re unsure, getting a second opinion will help you feel reassured and come to terms with it.
Like Eyesright says, Facebook groups and the Macular Society are great resources, please do make use of them. I’ve found them extremely useful. Xx
I’m happy that you got the right dx and recovered some vision! that’s awesome! So for the most part I’ve always been nearsighted since elementary and I’m now 25 with -7.0 and -7.50 contact prescription. Each year my prescription gets a little worse and I’m so terrified that it just won’t stop especially on how high it is.
I went to see the ophthalmologist twice in the past two months- no holes or tears yet. She said that I don’t have pathological myopia yet. However I do have vitreous syneresis and peripheral cystoid degeneration. She told me that practically everyone has this but more common in nearsighted people. She did say that some of the time it turns into lattice degeneration which can be degenerative myopia. I left the clinic crying since I don’t want to get to that point! It’s so frustrating trying to explain these problems to anyone since everyone I know has great vision or not as bad as ours. From what I remember I’ve had flashes for a while but now they are more noticeable and I constantly have headaches and our more intense with them. Sometimes I see them if I get up to fast, with movement, or entering dark rooms. Mainly in the left eye (good eye).
I’m a nurse so I try to group all my assignments together so I’m not continuously watching my computer screen for orders which has helped and I do compresses after work. But this fear has been interfering with my personal life and some work. Everyday I cry atleast once from all the stress and worry and I wish it could go away. Anyway thank you for responding! Everyone on this forum seems super supportive! Sending hugsx
Yes it’s been such a relief. Although the treatment is ongoing and intense, it was good to have a diagnosis cause I now have a specialist team working with me to help me keep as much sight as possible!
I completely understand, my prescription also worsens every year and I dread the day it becomes too high for contact lenses! (This is very vain I know, but 🤷🏼♀️😂) yep... that’s my biggest concern with my prescription 😂 i think, well, i already have an eye disease, so please never let my prescription get so high that I lose the suitability to wear lenses!! 😂
My advice pretty much mirrors the advice everyone was giving me nine months ago on here; you need to try be present in the current moment.
I think the scariest thing is the not knowing when/if it might happen and almost waiting for it to happen.
But like a lot of the people replying above, I’m also still working (well, not exactly because of Covid) but I’m still able to work, still able to study, still able to drive and still able to live by myself. I’ve made some very small adaptations, like getting brighter bulbs in my house, making sure at work they don’t dim the lights in the evening (I work in a restaurant), and getting a special lens on my glasses to help with driving in the dark and on very sunny days. But these changes are so minor, they literally just help improve the clarity of my vision. When my eyes are under control, the problems I have in my left eye (I have six blind spots - two bigger ones to the side and four smaller ones across my central - but I can still read - as well as a bit of distortion) aren’t noticeable (unless I’m checking it by closing one eye); the brain is really clever and will use my good eye to interpret the images I see and it tends to ignore the problems in the bad eye.
It’s definitely about adopting a ‘I’ll cross that bridge when I come to it’ attitude. And if I do, it’s important to know there is help and support out there and changes that can be made to help make things easier. Like Be Free said above to me, if you can still live your life normally for now, then do.
The macular society has a counselling service and a helpline (phone or email) and they really are great at providing expert advice and supporting people with all sorts of eye conditions. I’d definitely recommend speaking to them or seeing if there are facebook groups for your conditions.
In the meantime, if you notice any changes to your vision or have more questions about your diagnosis etc, it’s *really* important that you call your care provider straight away. Don’t worry about doing this either. I’ve literally called my clinic twice in the last two weeks due to vision changes and they are always happy to check them out for me and make sure everything is okay, so please make sure you do contact your clinic if anything changes with your vision.
I know it’s all really scary but we’re all here together, we might not all have the same conditions but we all know how frightening it is and leaning on each other and sharing our experiences definitely helps! Some days are harder than others but like everyone who replied to me, we’ve all made it this far and you can too.
It’ll all be okay, just make sure you are always in touch with your clinic, report any changes straight away, talk through your worries with friends/family/on here, try and stay positive but also don’t be afraid to experience your feelings and to get support for them Xx
Thank you so much! this really gave me some hope. I’m dreading what’s going to happen. Mainly is the flashes that scare me. I haven’t met anyone my age with the same eye prescription who has experienced this so far. Where can I find the numbers to call? Please take care! Xx
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Update - OCT looking good
myopic CNV update- 4 months on…
