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O/T: I Think I'm Going Blind! Part VI


Starting Again!
Welcome to part six of the adventure. Catch up here;
part one
part two
part three
part four
part five

Here's a summary of the story so far. In June 2009 I started having a bit of blurry vision in my left eye, like when you wake up and need to rub your eye, but rubbing it didn't help! So I went back and forth to the hospital pretty much every 2 weeks until December. During which I had a bloods done, a chest x-ray, a head CT scan, a trip to a specialist rhumatologist. My eye problem isn't connected to my knee problem, I don't have sarcoidosis and seemed a pretty much random thing. So after 6 months of all this jazz I was discharged and had to go back in 4 months.

All was well after the steroids and so on, and life went on. Then at the start of March it started again, so after week of ringing a number that no one would answer last Thursday (18th March) I rang a different number and managed to speak to a human! She said I was due to come back about nowish but she could get me in until the 20th April or I could ring the triage nurse so I did that and she said I could either go in to the emergency clinic in Cheltenham that afternoon or Gloucester tomorrow morning, and as I live in Gloucester and it was Gold Cup week I opted for Gloucester!!

So I get there and I see this dude who I wasn't a great fan of said it was a flare up of the same thing and gave me dilation drops, steroids and a cream - yes a cream... for my eyeball! And said to come back as an emergency the next day.

So I went in Friday morning - the short version is I was there 5 hours and got a parking ticket in the process! Half an hour of the first waiting room and I got my stats done and sent through to the second waiting room. After about half an hour of waiting in there I realised I hadn't put my blue badge up so sent my Mum to put it up, but I already had a ticket on the window. (I appealed the ticket, but they said it's your own fault for being stupid so pay up! I'm appealing again - but that's another story.)

After about 2 hours I got in to see the Doctor. They didn't have my notes so I suggested they found them and there are a lot of notes! He went and found them, according to my Mum (my spy on the 'outside') she heard a nurse say they were in a cupboard! He um'ed and ah'ed for a while and got another Dr. who happened to be my specialist. He had a look and they had a chat in medical mumbo jumbo and they decided they were going to take a sample of my eye! Which is weird! I went into another room and just as the nurse was about to put the drops in the doctor appeared and said to put one drop in and to follow him, so I was waiting for the drops to take effect, about 3 1/2 hours had passed at this point, so I wondered up to the nurse towards the door and said "please can I go for a wee?!" So I wobbled off to the toilet and sent a text to my friend saying it's all kicking off!
So I saw another Dr. who had a look and my specialist had another look and he decided not to take a sample but send me for a test called a Fluorescein Angiography next week.

This brings us to Wednesday (24th March) they dilate your eyes and place a cannula then put some saline in to make sure it's working the add one dye, take some photo's add some more saline and then another dye and take more photographs. Now if you've ever had a light in your eye it's natural to squint. Now imagine having dilated pupils with very bright multi-coloured light shinning directly in them, the doctor said - open your eyes wider please! What a silly billy. I got them to show me the pictures on their screen which was pretty cool, wasn't like a x-ray, MRI or CT scan images I've ever seen. As I'm doing a computer science degree it was fascinating to me! Anyway they went and got the head of the department to have a look and she showed me a photo of the back of my eyes where the vessels are which looks like fork lightening, and many were leaking, which looked like thicker, brighter fork lightening. She said she'd talk it over with my specialist and call me in a day or two and guess what - I've not heard yet!

Thank you all for your concern it means so much to me. I know I haven't been around much lately, but as you can see I've had a lot going on. I'm also seeing a rheumatologist who had found elevated levels of serum ACE and something else in my blood so thinks I might have general arthritis which is worsening, I'm also seeing a neurologist as I've got guyon canal syndrome! And my pain specialist who I've been seeing since I was 12, and believed in me when everyone else thought I was a teenager trying to get attention, has left! So it's all kicking off, plus with my eye I can't look at a computer screen for very long (which is a bit of a pain for a computer science student!!). I've not been sticking to plan so find it hypocritical to come on here and give advice when I can't stick to it myself. I'm starting again from today, I've reset my tickers and am ready to move on, a lot of people, including many on this forum, have it worse than me and I've just got to get over everything and get a grip.

Thank you all, love, hugs and good vibes to you all,

Natt xxx
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Oh Natt, what a time you have had, I have missed you on the board, but I like you have been struggling to get back on track and don't want to give advice so have been lurking. I am going to try and get through today without any crap getting past my lips, just today and see how I get on, then I will face tomorrow in the same way. If I don't it will all go straigt back on again which I really don't want to happen.
I hope you hear soon from the Dr, it is the waiting that is the worst bit. You have inspired many people and given heaps of sensible advice, just jump back in whenever you are ready you will be welcomed with open arms :)


Starting Again!
Thank you for your kind words hun. I've broken today into 2 hour chunks, partly to catch up with my studies and partly for my eating! I'm fine up until about 5pm usually. I have a great routine in the day but the evenings seem to ruin me!

You're right about taking it a day at a time. When I was learning to walk again, they said most peole walk looking ahead at where they are going because their feet know what they're doing without watching, but for you now you need to look where you are, so stare at your feet and make sure you are doing it right and glance up occassionally to stay on track.

I'm applying this to my eating as of today. Focus on this day, this meal and don't worry about the lbs and stones far ahead!

Best of luck xxx
Hey Squiddie! We've all missed you on here. I understand why you didn't want to come on here, same as me, but I cleared my old account and made a brand new one for a complete new start. I'm taking it one day at a time, and like you, the evenings seem to ruin me! So I'm saving syns and a hex for the evening.

Good luck with everything, hope you get some answers soon, sounds like you've had a very eventful March! Julz xx


Slow but sure....
Hello Squiddie,

It's wonderful to see you again, and I'm so sorry that you have so much happening health wise at the moment.

I haven't been posting much lately either due to my DS's accident, he is still in hospital in Australia, so it's hard to concentrate on posting at the moment.

But, when I do get on the forum, it's wonderful to see you posting again, so take care my love, and good luck with the weight loss. X


Mad old Bat with Attitude
Hey Natt! Sorry to hear about all your probs. Please don't let them keep you off the board, these are the time you get payback for all the help and good advice you've given us!
Alot of us have reset our tickers and if we stick at it we'll triumph eventually!

"They didn't have my notes so I suggested they found them"

I actually spilled my coffee laughing at this! Still the keyboard needed a clean! xx


Starting Again!
I haven't been posting much lately either due to my DS's accident, he is still in hospital in Australia, so it's hard to concentrate on posting at the moment.
I can totally see that! My thoughts are still with you and your family. It's amazing that you're still sticking to plan :)

"They didn't have my notes so I suggested they found them"

I actually spilled my coffee laughing at this! Still the keyboard needed a clean! xx
When I was there I didn't know whether to laugh or cry!

Mrs V

Loves Life!
Oh My!!!

You really have been having a lot of fun havent you??? :( Glad to read that you are back Hun and you have been missed.
I hope that this issue gets sorted for you soon...blooming Dr's keep everyone waiting for results....grrrr!!!

Take care and its lovely to hear from you again!

Hey, sorry to hear what uve been going through.

Im an optician if you have any questions you want to ask me I will try my best to answer them. And keep on at that hospital!
WOW squiddieI have just read all your posts from the begginning. I had no idea what you had been going through. My goodness what a strng person you must be.
My prayers are with you for a good outcome with this ongoing problemxx
Having just been in hospital (after several trips to doctors and A & E), can I just offer some advice? I don't know if you have heard of them, but Patient Advice and Liaison Services (PALS) are absolutely fantastic. They will help chase things up for you, and even give you numbers so that you can speak to the correct departments directly!!!! They recently found out that the reason I hadn't received an appointment for a scan, was that the request had been filled out on the wrong forms!!!! I can only imagine how long that would have taken me to find out!!!!

Hope they can help.


Starting Again!
Hi Lonestitcher, I've heard of PALS they're a lovely bunch :) To be fair to the opthamology department when they've said "we'll see you again in two weeks" the receptionist has moved people's appointments to get me in, which makes me feel a bit bad as I know what it's like when you get a letter saying your appointment has been moved!

I'm just about to ring them as it's been a week now and see what they have to say for themselves, stay tuned for an update!


Starting Again!
Well after being on hold for half an hour and being transfered 4 times the result is... she doesn't know. She said my specialist is in tomorrow so she'll ask him to ring me... hearing will be believing!


I'm a greedy pig
i haven't being around[you'll all be glad to hear] due to the screen of my lap top breaking..don't know where i am going to find 270 euro to get it fixed..so only have access to a computer at home on weekend

so sorry for being a pain

i am so sorry your still having eye problems. i remember the eye specialists diagnosing me with cataracts using medical mumbo jumble..wasn't a nice experience...but at least my eye problems are minor in the scale of things..i just feel a freak as i was 28 a few weeks ago ...and i was diagnosed with cataracts about 2-3 years ago...and i think thats unusual

anyway hope your eyes get better

hope everyone had a good easter
Hi Natt, I was wondering whare you had gotten to.
Your posts always make me laugh, so I look out for them.
I'm sorry to hear that this thing with your eye s still dragging on, its been so long now, its always horrible waiting for a diagnosis for anything so to have taken so long is just horrible.
I can't blame you one bit for not sticking to SW whilst everything has been going on, in fact its very brave of you to start again now with all you're having to put up with at the minute.
I really hope you get it sorted soon, it sounds even without this you already have enough to contend with.
Good luck with and keep us posted on how your doing.
Take care x


Starting Again!

Well what an anti-climax. I got the hospital and they didn't know what I was talking about, so the receptionist went and asked the Dr's and finally someone knew who I was!

So I got in saw 2 doctors. I was then informed my notes were in 'file' (i.e. storage) and their computer systems had crashed. So she asked me fi I'd had a kidney function test to which I said I don't know. So she's going to post me a prescription and a if needbe a a blood form!

I didn't think this trip was worth a Part VII but my appointment in 2 weeks might be :)

Thank You all once again for your kind words, I've been back on SW and lost 2lbs :D

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