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proliferative retinopathy I'M SO SCARED


Hi leb sorry about your ongoing problems with the back ground bleeding. Yesterday I came back from shopping, I was getting something out of a bag and I thought I saw an insectg in there. I tried to get it out but it kept on moving and rising upwards then it got bigger and started spinning around, it was only then I knew it was another bleed My eye feels so heavy and uncomortable. Its now 10 days since the main bleed and my eye appears to be getting worse. I wish it would just stop. I can't remenber if you said, but how long jave you had diabetes?
 
Hi
Ive been diabetic for 21 years now. Im 32 so just feel to young to be having probs like tjis but life is cruel at times.
Sorry about ur eyes too. Its awful isnt it. Only time it feels a nit bettet is when im sitting or lsying still. The black bits r still and its a little eadier to deal with when theyre nit wooshing all over the place. Not verypractical though.
Best wishes hope urs improvr soon.
 

I am very sorry for you both. I only have this kind of bleed nowadays as a side effect of the steroid injections. It can sometimes las for four weeks - a bit of a bind when the effect of the injections only last for 2 months. unless it dries sufficiently to have laser. I remeber my friends and family being highly amused by my description of a fat hairy black spider swinging about on a very thick thread like a pendulum in one eye and a couple of underground -type cables criss crossed in the other so I was effecively blind. It wasn' funny! The worst par is that no one can ell just by looking at you so it can be dangerous too.
I am always pursuing non-existent insects Robin - it is so annoying.

Yes it is hard on you Leb. T1 diabetes and now this. You must be so worried. The thing is that they don't let it go on for ever.
It is probablly beter if it sops and clears naturally but if it doesnt hey will have to intervene. Try not o despair .
It just takes a bit of time for them to get heir heads around your case.
if you keep getting frequent bleeds hey will be wasting their money and will press for beter conrol for you - whic means they will help with your pump.
I don't think you have seen the eye consultant yet in that hospital have you? Once you do you start o get more sense.

There is sill time to reverse it all for you. Its very hard i know and you are right , you are too young to have to cope with it
On the other hand you may make a beter recovery because of that.

best wishes to you both. The hardest part is that noone understands excep your fellow sufferers.
 

Hi leb My type 1 diabetes is now 23 years old. I saw another black dot today while I was carrying back my elderly dad's shopping.

When i dirst had laser treatment in November my consultant said to take it easy and not to do strenuous things that might cause more bleeds. How can a person do that? I am acarer for my dad, I work part-time and I work all day Saturdays and it's cleaning till about 3.15pm and my employers are not interested and I have been told they need someone to work and do the job, roblem: ( which I do) and guess when I started the job , November 2011.

Unbeliever, thank you for your support and to you too Leb X Take care
 
I may be wrong but retinopathy seeems to affect 1 nore than T2. I don't know if there are any staistics on this. Mos of the people I recognise as "regulars" in the hospital seem to be T1 If i do meet any T2s they seem to be discharged very quickly.
This probably means that anyone having any kind of diabees for a long time is at risk.
When I was first diagnosed they said I had probably been diabetic for most of my adult life. I may have gone on for ever with i diagnosed if it had not been diagnsed by accident when I was nearly 60. Even so I had no sign of retinopathy then - until my levels were brought doewn too quickly. All very odd and a lot of questions to be answered yet.

I have often wonndered if the introduction of the annual retinal screening and he ensuing increase in hospital referrals have resulted in more money and research and is to thank for the improved reament.
I hope Robi n , Leb and everyone else soon reap the benefit of it.
 

I have deleted the quotes, as it seemed to have killed the thread :? I will like to say again that the quotes DID NOT come from the internet, I just tried to answer southerngeneral :|
 
I have now stopped looking on the internet. Thunk i have probsbly seen every article about retinopathy ans the dufferent stages of it.
Thete are so many contradictions you never kniw which is right. To be hones i tjink its unkniwn reslly what the outcomes are because ad unbeliever said everyone is diffetent.
You ate right in saying its mainly type 1 maybe because we are nirmally diagnosef in childhood and therefore had the disease longer. Who knows lets just jope the wonders of modern meficine help us all to keep ad much of our sight as posdible.
 
The internet is very bad for that being able to find just about every opinion or factoid that you want somewhere.

There are definately factors (probably genetic) with this condition that are as yet unknown to us that makes some people breeze through it while others really have a hard time.

Glad to see you finished with a smile it says a ot for you :clap:
 

Hi leb and southerngeneral. I did not get the quotes from the internet, its from the Insulin Dependant Diabetes Trust newsletter issue number 73. Registerd charity No 1058284. It is sent to me by post. Definately not from the internet. Noone is the same, some people may have many many years of no complications and other people, in a relatively shorter time with diabetes, with have more
 
Hi all
Just wonderef if anyone else gets very blurred vision along wirh the bleefs. I am sure over the weekend i have had several more bleefs and the blurrIness has worsened. I keep telling mysel maybe this is a sign that the blood is absorbing back and maybe the bleeds are because the vessels are shrinking. Then i panic and think maybe more vessels are growung and the condItIon is worsening.
Just dont know what to think anymore
Any views on this?
Thsnks x
 

Hi again sorry to hear that your eye is still causing you worry I'm not sure about the blurriness, TBH I get confussed about the different things that go on with my eye, I know I have had more bleeds this week. I am having difficulty seeing things at work and I have to scrutinise certain things and keep holding them in different positons to see the numbers or dates and I made a mistakon the till of over £5000 :shock: I have to go to a different eye/diabetes dr in acouple of weeks( never had an apoointment like lkie thkis before) and the letter said it could last 2 hours, have you had a similar appointment?

Also you can get blurriness with high blood sugars, could that be it? I really really do feel for you. :cry:
 
Hi no not had one like that could be good if they specialuse in both eyes and diabetes. Let me know how thst hoes.
My blood sugars have been ok a few hypos but no highs like there usef ti be. Highest is 12 lately wheras befire that would have been the lowest.

Good luck
 
You could be seeing the effecs of he laser leb. Hae to say it and not trying to frighten you but you did have a lot of laser when your eye was still bleeeding. I had this twice at firs. I saw firwework displays and hhad extreme blurriness.
These reatments did not work a all because rthe eye was too wet. with the bleeding. Could you not go back to Moorfields and sask abiut injections to dry it up? I was speaking to someone at the eye clinic who had to wait six moths for a bleed to dry but they did not have treatmen while it was so full of fluid as i doesn't work.
Give it a few weeks more and if there is no change I think it might be useful to call and ell them of our concern.

My appointments always last for several hours Robin. That is because they are with the consultant tin a very busy clinic and there are various procedures before you get to see him

he is a specialist in diabetic eye disease and there are other specialists there too. It is different to the general eye clinic so i sounds like the same thing.
When I go I have a visual acuity [eye test] in the general eye clinic then to another clinic for drops and I always have an OCT scan
and then wait to see the consultabnt and as it is the laser clinic I am there if they decide i neeed laser treatment.
This is the stage at which you star to ge some sense. Much of it is still waiting around though. Waiting for eyes to dilate , e=waiting for someone to do the scan , waiting for the consultant waiting for laser.

I dont think I have ever got ou under 3 hours but I would gladly sit there for six hours to see my condsultant.
 

Thanks leb and unbeliever, When I go for this new appointment, I will be weighed and my height measured, also a urine test, what medication I am on,possible eye tests with drops, also I need to take my glucose monitor machine. So, it sounds like a thorough examination and the letter is from the Diabetes team, time 8.50am. So I will need to get someone to take my daughter to school as I will have to leave just after 8am to get a bus to the hospital. I am hoping for a good outcome with some answers to the ongoing problems, so onwards and upwards :thumbup:
 
Hi Robin, No, that sounds more like a hospital diabees clinic appointment. As a T! do you already see someone in the hospital?

They dont normally interfere with any ongoing eye treament the eye tests tend to be for new patients not receiving treatmentt
already - because all hy do is to refer them to the eye clinic..

Whaever it sounds hopeful , maybe someone has decided that they need to take a good look at your diabees conrol to rule that out as a cause of your eye problems. As you say onwards and upwards. the more people you have on your side the better.
Sometimes seeing a new person can change everything.
Good luck with it all/
 
Thank you I hope so too, as the last 5months have been so worrying and stressful, because of my daughters daddy being so ill in hospital and I knoew what the outcome would be and he passed away in May. Even though I said I was fine and I'm ok, it was obviously affecting my insides babdly, with the eye problems and also the ongoing somach problems. I'm sure better times are ahead and it will be more positive. Hopefully my dr, this afternoon, will get me a Coeliac test done or something similar.
 
Hi all
Just wanted to let you kniw saw my diabetic consultant today who eas very positive about my whole situation. And at long last has agreed to put me on an insulin pump Altjough i know its no magic wand im hoping it will help to stsbilise my blood sugars.
My bkeefs have imorovef a bit today. Still rhete but not ad nany and the blurriness is a little improved. Im back for more laser tomorrow so will have to wait and see what gappens this time.

Hope everyone is doi g ok.
Very pleaded that ac is getting the treatment she wants niw

Bfn
 


Great. Let's hope we all get better very soon. Good luck with the laser Leb
 
I continue to hope and pray for all of you, good news anti-carb and leb, at last something positive.

I had extensive laser in my right eye, lost 40% vision, but since low carbing retinopathy seemed to stop, no further issues, I felt very safe and comfortable about it all, then last year, out of the blue, no reason at all, I had a bleed.
I was devastated, there was no explanation for it, my BP, bg, lipids, everything ok, it was a freak incident, a rogue bleed as the consultant called it.
The blood took 5 weeks to dry up, I did not need any treatment, vision has not deteriorated, no further incidents since.
I still have my driving licence.
We have to stay positive, we dont get guarantees with anything, but is ever so important to keep tight control of our bg levels, I am not even taking a day off, not even one single day, I wouldnt dare risk it and in actual fact by now I dont even want to take a day off my low carb life style, I am so used to it, its no hardship, I enjoy it.
 


Thank you WJ you are an inspiration! Although my control has massively improved since the days when I didn't even have a testing kit :shock: I am still guilty of taking time out now and then, and also of thinking I can pig out occasionally if I bolus extra. Well it's not ok. I am learning the hard way what a vicious and nasty disease diabetic retinopathy is, although I am confident that this vitrectomy will be successful in the short term, I will always be looking over my shoulder, either for it to come back in 'lefty' or start up in 'righty'.
I need to make the decision to low carb permanently, I keep doing it in fits and starts, then when something happens to stress me out and it's just too much effort to eat low carb, I return to carbs. Like this past week, at the hospital when the only thing available was sandwiches. So I bolus for them, but then my all or nothing mentality thinks 'aha I can have some more whilst they're not off limits' and I bolus some more, until I don't know what I'm bolusing for anymore and then either go low or high or richochet between low and high for the rest of the day.

I know some people can bolus for their carbs more effectively, but it only really seems to work in low doses (of carbs) for me. What's more important to me - eating what I want or being able to see clearly out of both eyes? That is the choice I must make daily.

WJ I'm sorry you had a bleed after good control, it sounds like it was not a recurrent one and it resolved itself in a manageable period of time.

Have you been given the all clear in your eyes now?
 
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