Eyes

[noblehead]

Re: Eye Help Needed

I think i'm right in my assessment of the situation- I probably have something called diabetic maculopathy and will be blind by the end of the year.

Did they not tell you the results right away?

 

[ShyGirl]

Re: Eye Help Needed

 

[noblehead]

Re: Eye Help Needed

No. I suppose a doctor will as I only saw nurses (?) today but if i'm being seen so quicly they probably know what I have already and what treatment to give me.

Right I thought the Opthamologist may have had a word with you about the results. I know it's not easy but try not to worry and see what they say on Saturday, good luck!

 

[Robinredbreast]

Re: Eye Help Needed

I've had a small dot in one eye since Tuesday. Sometimes it's white and i've had some pain which feels like stress type headache.

The problem is I had to go to A&E last November after some vision loss but the opto said it wasn't related to my diabetes or retinopathy , it was arare type of migraine.

I've read some posts on here that mention they knew they had a bleed. How do you tell?
If you suffer other issues such as headaches , visual disturbances and migraines how do you know when it's a retinopathy issue or something innocent?
I can't go to A&E all of the time i've an eye change but the paranoid and stress is making me ill. I've never been lasered but know my time must be coming soon :cry:

I'm so sorry to hear of your eye problems. I go to the hospital tomorrow for more eye laser surgery :cry: When I have a bleed, on a few occassions the eye feels odd, heavy and I have had what looks likes a large reddish worm across my eye. Afterwards it dispurses and ( the way I can describe it as) a child has drawn lines on my eye with a black marker pen, also floaters. Your eye problem does sound different from mine, as you said it could be migraine related and I understand fully you not wanting to go to A&E.
You may not necessarily have laser treatment, so please try and not worry to much as stress and worry do affect us . Do you have an appointment soon to see a consultant eye doctor? I go every few months, but some people only attend once a year. If you are still feeling so worried then you must go and see your own doctor who should then refer you on. Best of luck :thumbup:

 

[Unbeliever]

Re: Eye Help Needed

I have had maculopathy for five years and am not blind yet. Both eyes. I am going to the hospital tomorrow too for laser
Robin. Good luck to you too.

Try not to anticipate problems ShyGirl. These things take ime to develop and treatment slows them down. Nurses and biometrists generally do the angiograms in my hospital too. I dont' think it is always a case of results as such. It will probably be considered ogeher wih other informaion o tall hem what is wrong. An angiogram is not necessary for a diagnosis of maculopahy.

 

[Unbeliever]

Re: Eye Help Needed

Hope all goes/went well at the clinic todaay shygirl and hat they managed to reassure you. Do let us know how it went when you can.

 

[ShyGirl]

Re: Eye Help Needed

 

[Unbeliever]

Re: Eye Help Needed

Hi.
Hope this makes sense.

It looks like i'll be having laser soon but i'm not sure when. My next test will be another angiography in 5 weeks ish.

Doctor was nice and thinks I should call my nurse as I explained how I woke up in double figures even though I hadn't eaten anything carb laden yesterday (mum thinks stress is causing such high figures but i'm unsure. I have felt ill all week though) other than yoghurt , berries , omelette and one piece of burgen toast , so it's disappointing seeing levels I associate with illness or eating like a normal person.

He said i've a "bit of
maculopathy but it's reversible" (***?!) and what I can see in my vision is probably some loose jelly which shocked me a bit. I'm upset about having to give up diving lessons and the fact i'm in some horrible limbo but I feel slightly better.

I'm anxious about calling vnurse as she berated melast week when I told her i'd taken a metformin because after breakfast I was quite high but know my med regime isn't working and I refuse to sit at home with high levels waiting for "things to settle" given i've gone form 6% hab1c to over 8 in just a year after med changes , lack of help , med withdrawals and other bad luck I won't bore people with. Problem is i've used everything and it looks like Victoza makes me ill as I took an extra dose last night (2 x 0.6 mg) and felt so sick that I took to bed , had to fetch a bucket and find some old domperidone


Things are tough but I hope to stay strong and not give up.

Ill probably fail- there aren't any cures or guarantees once eye issues appear and i've a lack of support that makes it hard to get through each day- but right now I feel slightly calmer.

 

[Unbeliever]

Re: Eye Help Needed

Don't know what is happening with my computer . Sorry!

Maculopathy IS reversible but it depends on your control. You are obviously in the early stages and ther is everything o play for..

Bypass the nurse. Go to the Dr tell him about your eye problems . he will understand the urgency. If you don't get any proper help tell the people at the eye clinic. They can write to your GP and stress he urgency of reducing your levels.
You should finnd that the invovement of the hospital and the fac hat you have a complication of diabees will focus their minds.

My consultant actually arranged for me to see the diabetes consultant. They take me very seriously in the practice nowadays when I mention he hospital,
Don't despair . Your case soinds very hopeful. Your eye problems may turn out to have been the key o your geting he help you need with your diabetes and you may have a general improvement in your health/
I hope so.

 

[Robinredbreast]

Re: Eye Help Needed

I have had maculopathy for five years and am not blind yet. Both eyes. I am going to the hospital tomorrow too for laser
Robin. Good luck to you too.

Try not to anticipate problems ShyGirl. These things take ime to develop and treatment slows them down. Nurses and biometrists generally do the angiograms in my hospital too. I dont' think it is always a case of results as such. It will probably be considered ogeher wih other informaion o tall hem what is wrong. An angiogram is not necessary for a diagnosis of maculopahy.

Hi unbeliever, I hope your eye laser surgery went well for you. This time, I didn't have laser because it's 'like murky waters in there', as I have had yet another bleed so I was lucky!!!!!!!!! this time . I have to go back in 2 months, so I will see how things go on, my wonderful and funny consultant Mr K........... said my left eye is absolutley fine, so at least I have one good eye lol

I hope you have a lovely weekend in this glorious weather ( even though I worked all day from 9 to 5.30pm ) and I hope you have a lovely weekend too Shygirl. With best wishes.

 

[Unbeliever]

Re: Eye Help Needed

Hi Robin, I have had so many laser sessions i have los rackof the number. This time it was to fix " the seroid injections I had a couple of onths ago. Unlike you I always hope that they can do he laser as hat means it will be longer before he injections have to be repeated!
On this occasion I was a little concerned as we have being trying o get my left eye in a condition to be lasered for several months.
Two doctors my consultant showed it to were horrified and said hat they would not attempt it as they could see nowhere to laser.
I knew my consultant could do it bu though it might be a little fraugh. As you know laser ca someimes be sressful for patient and operative.
My consultant had no problem at all. The only time he warned me to keep perfectly still was when he was laserimg the other eye,
A iny bit sore and fuzzy still but my sigh wasn't affeced for long alhough it was quite intense in he left eye.
Too soon to judge the effect , if any on my sight.
I don't know what I should do if this consultant left. I would have o do he same.

Have a wonderful weekend too Robin and shygirl.

 

[ShyGirl]

Re: Eye Help Needed

Update

 

[Unbeliever]

Re: Eye Help Needed

I've probably said this before ShyGirl but you have to push them to get what you want. Otherwise they won't understand what is important to you- they will assume you don't mind who you see.

Do you have your eyes ested before seeing a dr? if so ask if you can be seen by DrX or if a note can be placed on your file saying that you would like to see Dr X if possible. It helps a great deal to see he same person and form some sort of a relaionship with them. If this is not possible ask someone abou the dedicated eye clinic. There may be reasons why they are not sending you there.

It took some ime for me to get the point across that I preferred to be seen by one paricular person . It is not possible to insist but
you can ask. In ime you will probably automaically be seen by this person without having to ask.
You could sart by thiking of some pretext for seeing a paricular Dr. You want to ask him/her to explain some comment they made last time or you have some information which they requested last time and which you have now fond for them.
When you see them tell them how important it is to you to see the same person. They are human after all and may be pleased
to find you have confidence in them Then you can build on that.

It is by no means an eact science and the more people you are seen by the more different opnios you are likely to get.
Regarding the field test I would give it a week or so and then call and enquire whether you can expect to get an appointment through the post or whether you ought to have made one separately.
Play the hapless confused patient [easy for most of us} and request help rather han accuse hem of inefficiency -however justified.

You really need to be pro-active in your own interests. Too many patiennts don't speak up and so it is assumed they are satisfied wih he status quo.

 

[ShyGirl]

Re: Eye Help Needed

Hi Unbeliever , hope you are feeling ok .

 

[SouthernGeneral6512]

Re: Eye Help Needed

Update for myself I suppose as this is a merry go round and it's time to keep a proper record.

My appointment this week was strange. I had been ill again so felt rotten/feverish and exhausted (I wish someone could explain to me why Metforim is so toxic for some as its cheap and the only meds I can now take are ones i'm not happy about ) and was saddened when my reading was 10 instead of my usual 5.4 (nurse panicked a bit and told doctor- very embarrassing) but long story short , and after lots of faffing about , I was told I don't need laser...but i'm being asked to go back in two weeks and there's no record of my last angiography which stunned me a bit.

I was also told that the doctor in May said the wrong thing as the "loose jelly in my eye that would need laser to seal it" wasn't true apparently.

I'm left feeling bewildered really as I still (obv)have bits of missing vision and every doctor tells me something different so i'm not expecting this post to be my last word on my eye issues.

I mentioned how confused I was and driving and was told modern lasers don't remove as much peripheral vision in the past (hmmm) and would I like a visual field test. I was surprised when he offered and even more so when I googled what one was exactly as I assumes some eye chart in dark room.

I wont be surprised if it's not been ordered but it was nice to speak to someone who knew about diabetes and ophthalmology .

Now i'm left wondering why i'm seen at an eye unit instead of the dedicated diabetic eye department , a place I last saw in 2009 ,and if continuing good control will be enough to keep laser at bay although with PDR and maculopathy I basically count the days and he did mention that they could laser or wait until problems appeared and do it then. I just have to calm down and focus on living with this constant limbo as it's drained me for years but it's out of my hands as to what happens next.

Just wish that I could see the same doctor each time. Being told "you need laser" then 9 weeks later "not at the moment" is crazy.

It's very hard to have any real confidence in them when there is no consistency :sick:

 

[ShyGirl]

Re: Eye Help Needed

 

[Robinredbreast]

Re: Eye Help Needed

I went in for the results of my visual field exam but ended up having more tests and being told I had some fluid on my eye and would have to go back next week.

I'm very confused but they are vague when you ask questions (I know it's the "keep a close watch and intervene if needed" condition which makes it incredibly hard to know where you stand) and I was already upset/unable to concentrate due to the person I went with saying nasty things to me .

Not up to fighting my corner much and finding it hard to control stress levels what with so many non diabetes related issues going on.

I'm not sure what is happening but I still think i'll need laser by January despite what the doctor said. The only good thing about is that i'm finally seeing the same person instead of walking into a room with a stranger each time.

Hi shygirl :wave: its a bit like wading through fog, trying to find a clear view with some clear answers at the end. I know the clinics say you need someone with you for eye laser surgery, but I have always gone on my own with no problems as I get the bus then a 15 minute walk. Having inconsiderate nasty people with you at such a anxious time is just not on why someone would do that is bewildering. At least you will be seeing the same person, which is much better. Keep us posted and I truly hope things start to get better for you. Take care RRB X

 

[Unbeliever]

Re: Eye Help Needed

I know what you mean shygirl. Ypou have put your finger on the worst aspect of all this. They just can't give you definite answers so you never know what the future has in store.

I see people who just accept whatever happens and don't ask questions and just obey instructions and accept that all will be well
waiting with me . If you can be like that themn perhaps you are lucky but if i had been like that i would probablly have beeen blind and on large doses of insulin by now so it would noyt have been a good atiude for me.

As you say, seeing the same person is a major help. Eventually you and his person will get used to each other and learn to trust each other.
Its a wo-way st but takes time. You will learn to trust the dr and he Dr will learn what the most upsetting aspects are o you, how well you understand the condition and just what they can tell you without causing you undue stress in the event that you might misunderstand.
Some people would rather not know , others would rather know everyhing. he Dr has to make he righ judgement..
I went through a few years of hell now I can be calmer about it all because i trust the Consultant . he know I am not going to have hysterics whatever he says and I dont waste his ime by asking questions he can't answer.

there is one thing about this disease, whatebver our age and situation a bad outcome is equally terrifying although in diffferent ways.
As with everything else we have to learn o take each day sas it comes.

Certainly ditch your companion as RRB suggests. The appointments are stressful enough. I find other people's companions annoyig enough. I don't want to make smalll talk with hem while they wait . It is very stressful. I usually don't know wheteher I am to have treatment or not as it depends on he scans ec on the day. I like o be left in peace o compose myself and o pput my houghts in order so hat I am prepared o ask and answer questions.
My husband always comes with me because there is no public transport available but he knows better than to try to chat.

You will be better on yur pwn or speaking o fellow sufferers. This is ften a good source of nfo - rather like his forum.
Hang on in there, you are getting there,

 

[Robinredbreast]

Re: Eye Help Needed

there is one thing about this disease, whatebver our age and situation a bad outcome is equally terrifying although in diffferent ways.
As with everything else we have to learn o take each day sas it comes

.Spot on :thumbup: unbeliever, well said. I hope all the' problem eye members' out there, are having a nice day, its beautiful out there today, sunglasses are definate must 8) Take care all with best wishes RRB

 

[ShyGirl]

Re: Eye Help Needed