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Proliferative retinopathy

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Becks33

Well-Known Member
Messages
69
Hi guys

I just want to know can I live a normal life with proliferative retinopathy or am I to late? I’m only 23 and I feel like I’ve been given a prison sentence the ophthalmologist and diabetes team are scaring me and I constantly need laser treatment at the moment has anyone else experience of this and can reassure me I’ll be ok??
 
As far as I know I have not developed any eye problems, but I have developed some neuropathy in my hands and feet, possibly in my bladder aswell. I also get light headed standing up and I’m losing my hypo awareness which are signs of autonomic neuropathy. I am only twenty and have only been diagnosed 3.5 years although I do not have the same complications I know how it feels to be facing such a harsh reality that may be for the rest of your life when your whole life is ahead of you.

May I ask how long your diagnosed, what type and how poor has your bgs control been.

I’m now keeping my blood sugar in right control, excericing and eating healthily as well as I’ve stopped smoking, in a an all out effort to try and reverse the damage I’ve done to myself. I’m not sure if this will ever work but it’s the only hope I have.

I suggest you do the same as me if not already doing so, give yourself the best chance of a happy life you can
 


Hi there ,

Yes you will regain neuropathy and hypo awareness especially as you only have diabetes 3.5 years it takes years of variable blood sugars to give you long term complications you haven’t any long term but if you get control now you should be fine!

I am 23 soon to be 24 I have had diabetes for 15 years and the whole 15 I neglected and abused my body went months without testing or taking insulin I was always in hospital with DKA and had traces of keystones on a daily basis I also took recreational drugs and drank a lot of alcohol I am also a smoker, also my diet was horrific and I had a bad attitude! Now I have been diagnosed with proliferative retinopathy which is the worst stage of diabetic eye disease I require frequent laser treatment and right blood sugar control to settle this and hopefully not go blind and also give up smoking lol i rely on smoking to calm my nerves and stress!!

You will definitely reverse any damage , variable BGS cause long term complications like mine over the course of 15-20 years you definitely have nothing to worry about!!
 
I hope your right so badly, do you have any neuropathy yourse
 
hodor1234 said:
I hope your right so badly, do you have any neuropathy yourse
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Nope I have feeling everywhere lol , I have hugely neglected my diabetes for over 15 years I have severe sight threatening problems with my eyes but no neuropathy and anyone that usually suffers neuropathy ends up regaining feeling back once blood sugars are stable , controlling diabetes is so much better you feel amazing but you want to do this for you not because you have complications so control your diabetes now and you will be fine x
 
I have proliferative retinopathy, had 9 lots of laser in the eye and have lived a normal life with it (other than the couple of days it takes my eyes to settle down, but that's just me) I weight train, walk do everything that I normally would. y consultant told me that it wouldn't be affected by it unless I had a major bleed, but I haven't had anything other than a couple of small ones.
 
I have severe retinopathy and have had since I was 23, now 27, based on having a diabetic rebellion during my teens
I've had so much laser they cant do anymore and I continue to get bleeds. I've had 2 courses of injections and a vitrectomy surgery on my left eye.
I wont pretend it doesn't affect you at some point; if I get a bad bleed I cant drive until it clears, I struggle to read and even simple things like struggling to put the cap back on my insulin pen but as with most things life goes on. If I'd told myself at 23, that by the time I was 27 id have had all the treatment I did, and would have depth issues and a slight sight loss, I would have said I wouldn't be able to go on, but you just learn to adapt with it. I have a relatively good attitude about it all. Mecidine changes all the time! When I first started with laser it was painful and took 20mins for a small area, but now it's not painful, and takes 10seconds to cover 15000 laser spots. So treatment is getting better and better and will make it all so much easier knowing you have to go through it. I asked a few weeks ago will I loose all my sight at some point and the dr said not if I stay with them. So dont hide away from what they tell you needs done. It sucks but take it all in your stride. Itll all be ok! If I can be of any more help (not that I've been much) just ask!
 
Hi @Becks33 I had major bleeds in both eyes from 1979 - 1983. I had the earliest laser treatment. What you see in the avatar is what you get! I can still see very well, but with slight scarring. I can only put this down to very tight control. Sounds boring, but I have had an infinitely better life than I dreamt of back in 1979, at the age of 21. Good luck!
 

Hi there

I’m glad to hear you are better now I have had more laser today and more bad news I have lost all hope and faith in anything now as far as I’m concerned I’m going blind
 
I'm very sorry to hear this, but hope that your worst fears are not accurate. Please don't despair. Very much thinking of you. Grant
 
Grant_Vicat said:
I'm very sorry to hear this, but hope that your worst fears are not accurate. Please don't despair. Very much thinking of you. Grant
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I had a massive bleed yesterday and all I can see is blood I’m terrified
nothin seems to be getting better at all
 
Becks33 said:
I had a massive bleed yesterday and all I can see is blood I’m terrified
nothin seems to be getting better at all
Click to expand...

Oh I’m so sorry to hear, sending you a hug! How’s your hba1c been and how’s your blood readings? Has your team offered any more help? Carb counting course to refresh your memory? Libre sensor to show what’s been happening inbetween blood tests and see your overnight pattern? Different insulins? Anything to help you tighten up your management a bit to elevate your current situation?
 
Becks33 said:
I had a massive bleed yesterday and all I can see is blood I’m terrified
nothin seems to be getting better at all
Click to expand...
I really feel for you and I know you must feel completely on your own and helpless. I agree with @MeiChanski especially when I look back on my own experiences in my early twenties. As I shall be playing the organ for a 09.30 service today, I shall include you in the prayers. Keep fighting.
 
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