This is my first message. I just want to say 'hi' and introduce myself.
I'm a newbie - had my first injection today - and was diagnosed with MMD last month after experiencing wavy lines in May this year.
I have been told that there is a lacquer crack in my left eye.
I'm grateful for this blog as I have felt very overwhelmed by this diagnosis after having no eye problems before. The MMD information online is often academic and I feel uninformed and isolated.
I'm moderately short-sighted (-5.25 & -5.00) and now I am terrified of losing my vision. It's all very new and scary, especially in Lockdown. The second review at hospital today revealed that new blood vessels?! have built up behind the retina since mid-June so that's why I had the injection.
I'm back home with a sore, gunky eye feeling sorry for myself!
I know the situation will normalise and I have a lot of things to be thankful for - it's just the uncertainty and loneliness of it all. I guess my question is: will I still be able to lead a relatively normal life - and will I definitely become legally blind eventually?
I feel such a wuss, but would love to hear back from someone.
Bluegreensea xxx
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Bluegreensea
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Welcome to the forum. So sorry for your diagnosis. Its difficult to hear that something like your eyesight is damaged and leaves you with all sorts of fears and thoughts chasing round in your head.
I've just looked up your condition to get an understanding.
I have Dry Macular Degeneration which I wasn't told about when it was first diagnosed and I was actually told my sight was fine. I only learnt the diagnosis several years later when I went back to the Opthalmologist as I'd begun to see wavy lines that should have been straight. I hadn't a clue and thought it was just another migraine symptom.
I was told very bluntly by the consultant that it was the better of the two conditions ie Wet Macular or Dry Macular but that the bad news was there was no cure and it could turn to Wet Macular for which I could then get injections. And that was that! It certainly wasn't broken gently to me. It was like being hit with a brick!
I went home thinking I may go blind overnight! But then I googled etc like you do and bit by bit
I've kind of learned to accept it, most of the time but not looking forward to injections which I'm sure I will end up having!
I spoke to someone at the Macular Society and found them very supportive and the RNIB.
Its hard to realise that there's not a lot you can do to improve your condition like taking a tablet for a headache say and its that loss of control I found difficult to come to terms with.
You are not a wuss believe me. However you will do it, it just takes a bit of time.
Hi bluegreensea , I have a different condition but we are all in the same leaky boat together!
The macular society have a great helpline and support, check out their website.
On this forum we've made some topics called "Useful Stuff" which contain the sort of info you might find helpful in the early days of injections etc. It's a bit clunky to find them as the HU site search isn't very good - click the 9 circles on the header, select Macular Society, scroll way over to the right ( landscape works best), scroll down, see pinned posts, click all topics.
Sight problems are known to be akin to bereavement emotionally so be kind to yourself. I cried myself to sleep for 2 weeks on my diagnosis but 6 years later, aged 58 1/2 I'm still working and driving.
I am comforted by the replies from people here. Two already and I only joined late this afternoon!
It's more than I could have hoped for earlier today.
I'm still processing all this , and yes, it does help to think of this as a bereavement of sorts. I'll bear the different stages of grief in mind - I know from experience that time is a great healer!
Looking forward to getting to know more people on here, and being in the position to offer comfort and support to others one day soon.
Meant to say, the mac soc have a Facebook page too for " working age" folk but of course that's not as anonymous as HU. It does get a different range of inputs, I browse both.
Hi. I totally agree its certainly a shock to the system and you feel alone and isolated. I think the hardest thing for me is trying to explain how And what I can see as we all look ok but unfortunately not been able to see ok. This group us fab and also get in touch with rnib. Take care regards mandy
Hi Bluegreenseas. Welcome to the forum. You've come to the right place for good advice and sympathetic ears. I have wet AMD in my left eye and was diagnosed just over two years ago. It came as a real shock to me as I just thought I needed new glasses and hadn't had my eyes checked for about eighteen months (the optometrist had put me off the last time I had my eyes checked) and because of that, I have permanent damage. I was very upset and scared when I was told, particularly when the optometrist (a different one) told me that I would probably have to have eye injections. I thought he must be wrong but he gave me an urgent referral for the eye hospital for that day. I have been having Eylea injections regularly until Covid, but not so regularly for the last four months which has taken its toll.
How did you find the injection, did it go well? What have they told you about your condition? I know it's easy to say but try not to worry too much about it, the injections should help. All the best. xx
I have been diagnosed with MMD and have a lacquer crack. No one explained anything more and I was left to research the condition by myself - the results of which left me feeling scared and alone. Thank goodness for this forum.
The injection itself was not as bad as I had imagined, although it was very sore afterwards, and I had to go back to hospital last night as there was a lot of discharge which might have indicated an infection. This has been virtually ruled out, (was probably the antibiotic cream escaping throughout the day - the iodine had added a yellow colouring to it) but a swab was taken for testing anyway.
I still worry about the other possible risks of the injection: stroke, heart attack, detached retina! It is rather unsettling! (Are my ears pounding today - or is it my imagination?!)
My vision is rather blurred today but I guess this will calm down.
That's worrying about COVID affecting your injection appointments. Fingers crossed for you and others waiting.
Hi Bluegreensea. The soreness could be due to the iodine, a lot of people have problems with it especially if it is not flushed out thoroughly - the person who normally injects my eye is one of the culprits of that in spite of being told a few times by the opthalmologist that it needs thorough flushing and I have a few nasty experiences of it.
That's not very professional at all not to explain the condition to you, they train for a long time to do this sort of work so why not take the time to explain, that's part of their training surely.
I know what you mean about the risks of the injections but what do you do, being almost blind is such a daunting thought.
Your vision will be a little bit blurry for a day or two - some people experience it for longer - it is normal but if you get concerned, particularly as you are new to this, just ring the clinic and ask. All the best to you. xx
A doctor washed my eye throughly with saline when I returned to the hospital last night - it felt very soothing, although I didn't realise it might have been the iodine that contributed to the soreness, thanks for the tip. I'll prompt the doctor who injects my eye next time to do the same.
Thinking of you. I’ve always enjoyed relatively good eyesight too and I’ve had a bit of a shock this week being diagnosed with central vein retinal occlusion. I’m supposed be having an injection in about a month, and absolutely dreading that.
Totally with you in terms of feeling a bit alone right now and grieving for My site loss and potential life limitations in the future. I’m 46!!
I wake each morning feeling rested, then I see the shadowy 'hole' on opening my eyes and sink. I spend the entire morning just trying to raise my spirits again!
I find drinking coffee first thing tightens my focus. I'm also doing a bit of yoga - a routine made up of the bits and pieces I know - caring for the rest of my body helps me mentally.
Someone mentioned on here that it's impossible to describe the world through our eyes because we look 'normal'. The irony of the condition being invisible to others. Then I think of the future, and the possible need for visual aids - and I sink once more!
Being around people with a similar sense of humour is the greatest help!
Yes, I’m experiencing similar ups and downs. Have cut out coffee and wine, as I think mine might have been a result of dehydration? Feeling really anxious today and trying to focus on the fact that I have one good eye.
I’m also trying to practise self care... yoga, long walks etc
You’re right that nobody really understands, because we look normal. I’ve 3 children the youngest being 11, so I’m trying to hold it together so as not to worry her!
Thanks for contacting me.. so nice to hear from someone going through similar thing x
I can relate to your feelings.....when I first learned I have wet MD I was frightened, too. I learned this condition is often hereditary (my mother had
it), and sadly, 10 years ago for her there was no help. Now we have the injections, and there is HOPE!
I have had 4 Eylea injections since March. The first 3 are called “the load”, and they are spaced 4 weeks apart. Before each injection, my retinal specialist gives me an OCT scan to look for changes. In June I was moved to 5 week intervals. My next appointment is June 24.
I have had absolutely no pain when he injects.....BUT... twice I experienced round black blobs, which were explained to me as residual air or silicone from the needle. Those lasted the whole day and disappeared when I woke up the next day.
After the 3rd injection, I lost sight in the injected eye.....that was quite upsetting, but after 10 minutes, it corrected, and I was fine.
Another residual I experienced 3 times was a very bloodshot eye...that lasted about 5 days....again, no pain, just red eye. My dr. injects in the lower part of my eyeball, so the red area was not too startling, just noticeable at the injection.
And so, try to think positive....the injections truly are our only hope to prevent progression of our problems. Right now I can read perfectly, and still need distance lenses. I will get these injections forever if they keep me stabilized.
Thankfully, my Medicare and Medigap insurance policies pay for everything.
Good luck to you. This forum is a very valuable resource!
Good to hear from you. I didn't know that the first three injections are referred to as 'the load' - I quite like that terminology!
Frightening tale about the third injection - did they explain to you why your vision temporarily disappeared?
Yes, think positive! I'm going to a second-hand bookshop later today - I've been avoiding reading of late as I was perturbed by the 'bendy' text. I'm determined to not let this hold me back!
Yes, my friend, stay determined! I am encouraged with the knowledge that the doctors have found success with the injections. Truly, they do NOT hurt, so what a blessing that is!
About my third injection resulting in loss of vision......wow, that was terrible, to say the least. The nurse said it is a rare occurrence, and it would go away, which , after 10 minutes it did. And so NOW I know that I should anticipate both the black blobs and a temporary loss of sight. I think I will always need to mentally prepare myself that something weird could happen.
Really, these injections to preserve our vision is all we have.
It’s something positive....and they are giving us good results, so far.
Good luck. Keep checking this forum. It has a wealth of information to help us.
So glad you found this group. I am in the USA. I have myopic degeneration and so does my brother. I am 60. My distortion began a few years ago. One of my eyes has not improved with the injections but I don’t notice the distortion in it because my other eye is stable and takes over. I still work and drive. I thought when first diagnosed I would soon be disabled but the disease progression has been slow and with treatment I hope yours will be as well.
Just saying hi to you Bluegreensea. I am so happy you have had a lot of replies. Mine has arrived a little late, sorry. I have MD in one eye and the other may follow suit later. Don't let it get you down. We are here for each other and it is very comforting to know it. My sore back keeps me from typing much but am here whenever you need to talk. Best wishes xx
Hi bluegreensea, welcome to the macular community. It is very scary to get a macular diagnosis. I was diagnosed with dry macular about 10 years ago and really didn’t notice much difference in my vision until a couple of years ago which was due to cataracts. Since then have had two cataract ops which really helped. My left eye went Wet last year not long after my husband died suddenly. I have had two loading doses of four Injections. My eighth injection was two months ago and I had a review this week when I was told there was no active wet md at this point though I do have a lot of floaters. So, take heart. Can be a lot of emotional ups and downs but you are not alone. Like others, I have very painful after effects from iodine. There are alternatives or it can be used minimally with lots of flushing. Stick to your guns and don’t be fobbed off. Easy to say but difficult when you are feeling so vunerable. Macular soc counselling service is excellent. Give it a go. Enjoy everything you can. Be good to yourself.
Thanks for taking time out to write to me; I really appreciate it.
I'm very sorry about your husband, that's very sad to hear.
"Enjoy everything you can" is an important reminder.
I went for a long walk with an old friend today, and I welcomed not having to be alone with my thoughts - which are pretty much negative at the moment!
Trying to 'be good to myself' in terms of diet and exercise - though chocolate, beer, and cake have all featured this weekend in varying amounts. I struggle with cutting down on screen time however, spending hours online researching since the diagnosis.
I will contact the Macular Society counselling service; again thanks for highlighting this.
Enjoy the rest of the weekend - weather looking decent tomorrow!
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