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Diabetic Maculopathy

whcarh

Member
Messages
9
Very worried, just had a Retinal screening and had a letter saying might have Diabetic maculopathy. I feel that blindness is imminent.

Anybody any thoughts ? :shock:
 
sharonmac said:
whcarh said:
Very worried, just had a Retinal screening and had a letter saying might have Diabetic maculopathy. I feel that blindness is imminent.

Anybody any thoughts ? :shock:

I just done a search and came across this http://www.diabetes.co.uk/diabetes-complications/diabetic-maculopathy.html

Hope you find it usefull

Sharon xx

Might have is a far cry from actually having it. More tess will be required and even then he condition may correct itself.
Good bg control will help.
I have had maculopathy and macular oedema for five years. That link was spot on. Unfortunately avastin injections
did not work at all for me .so my only option was he steroid injecions which are now starting to have the side effecs referred to i n the link.

I should be very surprised if blindness was imminent for you. You may eperience some loss of central vision but this may well improve with laser. I can't srtress enough that keeping your bgs stable is very important.
Has here been some recent change in your bg control? My problems began when medication worked too well.

If by some chance you do have maculopahy and if it happens not to respond as well as you migh like to laser then I would advise you to request avastin injections. if your hospital does not offer t hem you can be referred to anoher which does..
They don't work in all cases but when they do they can solve the problem.

I have had many problems and a great deal of treatment but i am not blind. Try not to worry too much {difficult i know}.
Do what you can to help yourself and you may be able to reverse it if you do indeed have maculopathy.

You may find that this is not the case but even if it is there is no need to despair..
 
Hi,

I too have been diagnosed recently with this problem, as everyone i look at looks like they have a stroke or are an alien ! I thought it required urgent treatment but my appointment at the eye hospital is the end of October.

Unbeleiver, I think what you say about better control causing the ptroblem may be right. My last HBa1c was the best it has ever been, despite little slip ups with comfort foods.
Whcarh, hope all goes well for you.

love

Bernie x
 
bernie.freeman said:
Hi,

I too have been diagnosed recently with this problem, as everyone i look at looks like they have a stroke or are an alien ! I thought it required urgent treatment but my appointment at the eye hospital is the end of October.

Unbeleiver, I think what you say about better control causing the ptroblem may be right. My last HBa1c was the best it has ever been, despite little slip ups with comfort foods.
Whcarh, hope all goes well for you.

love

Bernie x
Hi Bernie , Thanks for the good wishes. I was already a patient at the hospital eye clinic because my dr {before retinal scrreening was introduced for all} though he could see something on the macula . The hospital couldnt, but kept me on their books for a year with 2'3 monthly apps but nothing. They were just about to discharge me - I had gone in for that purpose when they found I had suffered a major bleed. I had been at the hospital a few days previously and all was clear. In the intervening few days my medicaion had been changed and my bg had fallen drasically and immediately. The hospital had no doubt about the reason. They said it was very common..

Could i just point out to anyone who is worried abou a delay in waiing for an appointment that it is not always the best thing to have URGENT treatment in these cases. Less can be more with it and they sometimes need to wait to see how things develop.
I was rushed ino having laser too soon which fried my retina. It would not happen now but was definitely not the best thing for me.
It limited the reatment options later .
You are bound to be anxious but it is not a condition where immediate intervention is usually the best course. Hope everyone is OK and that their problems turn out to be very minor and clear up soon.
 
Thank you to you all for replying, much more positive now. As you can see, sleeplessnes with worry is the Norm at the moment
 
Hey.
I was diagnosed with maculopathy and had laser treatment for it last year as it was close to the centre of my eye. The laser treatment was quick and painless and most of the debris that was in my eye has cleared over the past year. I'm still on the hospital clinic for it, but they're aiming to sign me off next session (early next year)
As my diabetes and hba1c has improved (I'm 23, 21 when I was diagnosed with Maculopathy. Type 1 since I was 8) the debris and traces of maculopathy has disappeared. IT IS TREATABLE AND HEALABLE. If I hadn't of improved my hba1c, I would have been stuck with having additional treatment
Also, maculopathy hasn't affected my eyesight at all. I am slightly short sighted and have been since I was 13, I was lucky that maculopathy didn't affect this, considering how close to the centre of my eyes it was.
If you have any questions, don't hesitate to ask!
 
I had exactly the same diagnosis last year. i got a letter saying i had M1 maculopathy in the right eye. I then asked to be treated at a better hospital. they referred me to St Thomas in London. I went to see the opthalmologist and they diagnosed me with maculopathy in both eyes. I had another scan 6 weeks later and they said that there were no bleeds so now I am having a scan every 6 months. The key to stabilising this condition is glucose control. Try not to allow your sugar to go over 9 and avoid hypos. Its the drop and the spike which cause the leakage or bleed in the eye. I started taking i-caps from boots which has 10mg lutein. My vision improved drastically and I can now even read the TV menu without my glasses.

My hBA1c was also about 12% at the time. i have slowly dropped to 8%. A big drop suddenly will also cause the maculopathy to worsen. You have to do this drop gradually. I found 20 mins of cardio per day helped me. I then started going low carb and keeping a food diary.

i wish you luck. You may not need treatment for this at this stage so there is hope. Just work on getting your HBA1C down to 7%. This is my goal too.
 
I had exactly the same diagnosis last year. i got a letter saying i had M1 maculopathy in the right eye. I then asked to be treated at a better hospital. they referred me to St Thomas in London. I went to see the opthalmologist and they diagnosed me with maculopathy in both eyes. I had another scan 6 weeks later and they said that there were no bleeds so now I am having a scan every 6 months. The key to stabilising this condition is glucose control. Try not to allow your sugar to go over 9 and avoid hypos. Its the drop and the spike which cause the leakage or bleed in the eye. I started taking i-caps from boots which has 10mg lutein. My vision improved drastically and I can now even read the TV menu without my glasses.

My hBA1c was also about 12% at the time. i have slowly dropped to 8%. A big drop suddenly will also cause the maculopathy to worsen. You have to do this drop gradually. I found 20 mins of cardio per day helped me. I then started going low carb and keeping a food diary.

i wish you luck. You may not need treatment for this at this stage so there is hope. Just work on getting your HBA1C down to 7%. This is my goal too.
Thank you for your reply, I am in a similar state in terms of HBA1C reading. Will take your advice
 
I was recently found to have a retinal bleed in my left eye. The optician was great and referred me immediately by phone
to A hospital which she knew had a shorter waiting list. Speed was of the essence as it was very close to the macular. I was
given an appointment within 2 weeks and prescribed a course of 3 Lucentis injections. I have had the first and it is not something
I want to do every day of the week (a peculiar sensation) but it didn't hurt, and already there is an improvement, so hopefully all will
be well.

There was no apparent reason for this- BG is well controlled , BP is as it should be, weight is right for my height and I have only
been diagnosed about 12 months. It appears it can happen to anyone.

Timmytoes, Apr 4 2014
 
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