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Type 1, 25 with DME worried about blindness(update)

S

SamD1994

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21
Few months ago I posted this after ha ing a hemorrhage in June in my right eye , I have huge anxiety about going blind and worrying about it takes up most if my time

I been diabetic since I was 8, now 25, my teenage years was very poor control and it only got slightly better in my early 20s, I looked after myself , did not drink, smoke or eat sweets but my poison was takeaways and sometimes not taking enough insulin in fear of hypo and rebound highs but earlier last year my first gf of 3 years dumped me after cheating on me and I didn't look after myself during this time.

I got diagnosed with maculopathy which required several laser treatments which went fine but after the hemorrhage a the eye infirm were in two minds about eye injections since my vision was "so good" despite me telling them everything on the eye is slightly blurred and bright lights are over exposed. They gave me the injections and after day one it was like I had a new eye, completely fixed!

I worked really hard to get blood levels down and though sometimes they hover round 10 and 12 mark they have much improved, even my specialist said they are best they been in years. Last month I got some laser and its through me.right back on edge as their are now speckled in my vision when I look at the sky or a blank wall, if I close my good eye there are also dark spots were it was lasered and I'm.scared it has made my vision worse on a sense. I'm due my next and 4th eye injection in a weeks time but I cant stop worry I'm going to go blind!
 
Hi @SamD1994

Sorry to hear about all you’ve been through, you’ve made massive progress turning this around so good on you for kicking it into touch.

I have no knowledge of the effects of laser so will tag others who may be able to offer more input @Jaylee @himtoo @Grant_Vicat @Mel dCP
 
i think it may just be scarring

I had lasering for proliferative retinopathy for both eyes in November last year and there is scarring where it was done

I also have had numerous eyelea injections for diabetic macular oedema which I was unfortunate enough to be diagnosed with less than a month after being diagnosed type 1, first was a course of 3 injections in each eye and then I've required top ups in both

I'm not sure whether your anxious and wondering whether to not have the next injection? I wouldn't suggest missing it though as it would do more damage than good
xx
 
HI Kaylz ,

I'm definitely not going to miss any treatment. Does the scarring go away or at least reduce?

My anxiety is more focused on the idea of going blind, not being able to see , read or do things I love i.e watching films and making them (I'm a videographer)

If you don't mind me asking how is your vision now? Did your eyes improve bybtye end of treatment?

Thanks for commenting:)
kaylz91 said:
i think it may just be scarring

I had lasering for proliferative retinopathy for both eyes in November last year and there is scarring where it was done

I also have had numerous eyelea injections for diabetic macular oedema which I was unfortunate enough to be diagnosed with less than a month after being diagnosed type 1, first was a course of 3 injections in each eye and then I've required top ups in both

I'm not sure whether your anxious and wondering whether to not have the next injection? I wouldn't suggest missing it though as it would do more damage than good
xx
Click to expand...
 
Hi @SamD1994 ,

I've not had laser. But have had the anti-VEGF jabs. Oddly i was diagnosed with Macular issues after i cleaned up my D act..
I've since read that A1c improvements should be gradual, going at it like a "bull at a gate" could ironically still cause eye issues? (Which was the incentive to tighten up control in the first place.)

I empathise that hearing the news & the procedures involved in treatment can cause concern.
Continue with the treatment & hold a steady slow course with improvements on your management.
Things should get better.

I was discharged from further treatment earlier this year? :) Though i still attend regular monitor screening.
 
SamD1994 said:
HI Kaylz ,

I'm definitely not going to miss any treatment. Does the scarring go away or at least reduce?

My anxiety is more focused on the idea of going blind, not being able to see , read or do things I love i.e watching films and making them (I'm a videographer)

If you don't mind me asking how is your vision now? Did your eyes improve bybtye end of treatment?

Thanks for commenting:)
Click to expand...
my good eye is really good, I cant comment on the left eye tbf as I went through school being told my eyesight was perfect to then go to the opticians after I left to be told it was damaged due to a lazy eye that they hadn't picked up on at school (that's why I wear glasses)

I was having 3 monthly check ups throughout all my treatment (not easy when the only hospital to deal with it is 30 miles away and they always give you 9am appointments so you have to try and arrange someone to be able to take you lol) but at my last check up a few months ago it was extended to a 6 monthly and booked in for October

If your worried ask what the eye consultants thoughts are, at my check ups I always get the pics of my eyes done and then examined by the consultant so they should be able to help put your mind at rest
xx
 
Hey bud,

My biggest concern is my good eye getting maculopathy through cleaning up my act.

I stress every day and especially on mornings and nights about going blind and not being able to read, watch films and just get about.

How is your eyesight now if you dont mind me asking bud?
Jaylee said:
Hi @SamD1994 ,

I've not had laser. But have had the anti-VEGF jabs. Oddly i was diagnosed with Macular issues after i cleaned up my D act..
I've since read that A1c improvements should be gradual, going at it like a "bull at a gate" could ironically still cause eye issues? (Which was the incentive to tighten up control in the first place.)

I empathise that hearing the news & the procedures involved in treatment can cause concern.
Continue with the treatment & hold a steady slow course with improvements on your management.
Things should get better.

I was discharged from further treatment earlier this year? :) Though i still attend regular monitor screening.
Click to expand...
 
SamD1994 said:
Few months ago I posted this after ha ing a hemorrhage in June in my right eye , I have huge anxiety about going blind and worrying about it takes up most if my time

I been diabetic since I was 8, now 25, my teenage years was very poor control and it only got slightly better in my early 20s, I looked after myself , did not drink, smoke or eat sweets but my poison was takeaways and sometimes not taking enough insulin in fear of hypo and rebound highs but earlier last year my first gf of 3 years dumped me after cheating on me and I didn't look after myself during this time.

I got diagnosed with maculopathy which required several laser treatments which went fine but after the hemorrhage a the eye infirm were in two minds about eye injections since my vision was "so good" despite me telling them everything on the eye is slightly blurred and bright lights are over exposed. They gave me the injections and after day one it was like I had a new eye, completely fixed!

I worked really hard to get blood levels down and though sometimes they hover round 10 and 12 mark they have much improved, even my specialist said they are best they been in years. Last month I got some laser and its through me.right back on edge as their are now speckled in my vision when I look at the sky or a blank wall, if I close my good eye there are also dark spots were it was lasered and I'm.scared it has made my vision worse on a sense. I'm due my next and 4th eye injection in a weeks time but I cant stop worry I'm going to go blind!
Click to expand...
Hi @SamD1994 After my reply to your original thread I can only add the following. Bearing in mind that my laser treatment (1979 - 1983) was in its infancy and therefore primitive, your chances are infinitely better than 40 years ago. I am slightly paralysed in the left pupil and have scarring in both eyes. At first this interfered considerably, but I think some of this improved and my sight has adjusted to it. If I am trying to follow aeroplanes or birds across a bright sky, I sometimes confuse them with the scarring. I must stress that my experience can not have any bearing on any other patient's, and nobody can give you a guarantee for your outcome. As you are taking your regime very seriously, receiving the most advanced treatment there is, and are seeking help, I cannot suggest a better way to give yourself the best chance. Anxiety and (often unnecessary) worry don't help to keep a stable HbA1c. Easy for me to say this, but such advice certainly helped me to get to the ripe old age of 61 instead of the predicted 20 when I was 13. Good luck!
 
Hey bud ,

Thanks for commenting again . How would you say your eye sight is now?

Yeah anxiety doesn't help but I'm often alone and that's the time when thoughts creep in or I get hyper focused on my vision. Seeing if i can see dark spots or speckles and tearing If my eyes are in focus etc...

Atm I'd say my vision is pretty good, it just the speckles and odd dark spots if I look at a bright sky and close my good eye. What's annoying is these seems to of only happened after the laser, whereas after my first injection my vision was perfect .

I just worry they are getting worse, and that cause I'm getting my Act together a few people have said that what caused more problems so I fret over my good eye.

I'm trying to keep bloods stable, and I'm going to all my appointments, I just had a hb1ac done wo will find out if it has lowered as usually last few years in have stayed around the 84-88 mark.

Thanks for commenting again bud!
Grant_Vicat said:
Hi @SamD1994 After my reply to your original thread I can only add the following. Bearing in mind that my laser treatment (1979 - 1983) was in its infancy and therefore primitive, your chances are infinitely better than 40 years ago. I am slightly paralysed in the left pupil and have scarring in both eyes. At first this interfered considerably, but I think some of this improved and my sight has adjusted to it. If I am trying to follow aeroplanes or birds across a bright sky, I sometimes confuse them with the scarring. I must stress that my experience can not have any bearing on any other patient's, and nobody can give you a guarantee for your outcome. As you are taking your regime very seriously, receiving the most advanced treatment there is, and are seeking help, I cannot suggest a better way to give yourself the best chance. Anxiety and (often unnecessary) worry don't help to keep a stable HbA1c. Easy for me to say this, but such advice certainly helped me to get to the ripe old age of 61 instead of the predicted 20 when I was 13. Good luck!
Click to expand...
 
I could live without any correction except I would need long arms to read a book! I sympathise with the problems of being alone for any length of time. I suppose this Forum is helpful to boost your morale. Bear in mind I had had 20 years of very bad control, with proteinurea and frequently blurred vision before I had my first laser treatment. A stern talking to from an ophthalmologist who specialised in diabetes at King's College Hospital, University of London, changed my lifestyle for ever. I owe him my existence, along with all the other medics and surgeons who had a better patient to deal with after his lecture!
 
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