A big moan

[Caza]

For the last month I’ve been having a huge problem (well huge for me) with my eyes. I posted here awhile back & had lots of helpful suggestions. Anyway things have got a whole lot worse over the last week or so. Today was meant to be ‘the big eye test’ at the hospital, which I’ve been fighting/waiting for, for the last two yrs. I was told the eye clinic was shut during the week due to covid so only open on Saturdays. I got a letter telling me drops will be used so not to drive, as I’ve had it done twice before so knew the drill. I got a friend to drive me to the hospital, an hour away. Arrived to an almost empty hospital no doctors on duty (we are talking a busy London hospital) so they gave me a bog standard eye test, all of ten minutes So not happy, I’ve absolutely no idea if my eyes are affected by the meds I’m taking or something else. All I know is that is something is going on but that no one is listening or caring. My optician said see your gp, really they’ve been shut for 18 months emergency only on the day. Thinking about stopping the meds not sure what else I can do 😞

[Pippy25]

Caza I am so so sorry to hear this and am at a loss as to know what to say other than someone HAS to DO something here. This is not acceptable. Keep on until you get answers. Sending you my heartfelt wishes x

[Caza in reply to Pippy25]

Thank you. I’ll email my consultant today.

[Neonkittie17]

Sorry Caza for your troubles. 😑 You should not have to stop your meds .. Can you leave an urgent message on the rheumatology helpline or email them if they do it thst way? Don’t be fobbed off as your eyesight and your joints are both equally important. You’ve waited 2 years so should have the in depth eye exam you need. Hope rheumatology can arrange to rebook you in. Don’t give up. x

[Caza in reply to Neonkittie17]

I don’t have a helpline but I’ll email my consultant. I did ask for an appointment to go over the results of my scans & X-rays, the earliest date they could give me is mid September 🙄

[Neonkittie17 in reply to Caza]

Gosh that’s not on, you having to wait till September to find out your results, but I’m not surprised. 😑 I asked end of April to be able to have a phone call review with my rheumy re side effects of my med as hadn’t seen her or spoken to her since January 2020 and I got a letter on Thursday to say it will be mid June. Can you phone the appointments centre and ask if there is any way to be considered for a cancellation? We can phone each week to see if there are any but not guaranteed to be with the same consultant. Probably the Registrars.

Would the consultant send a letter to your GP so you could maybe find out that way? Mine always does but not sure how much those are delayed these days. Hope you can find a way to speak/know sooner.

[Deeb1764]

I can only send a hug as I can feel your frustration reading this x

[Caza in reply to Deeb1764]

Thank you.

[ruth_p]

They should definitely be taking it more seriously as your RA can affect your eyes. Call or email the rheumatology helpline at your hospital, write to PALs to complain about your eye appointment. This is not ok even if we are in a pandemic. Also GPs should now be offering face to face appointments. Do not stop your medication! If no one will help write to your MP. I feel angry for you, good luck and don’t give up 🧐

[Caza]

Thank you for replying. My left eye is like looking through a polo mint. I can see a circle ⭕️ the outer part is like looking through a mesh full of black dots. The nurse said she didn’t know what it is or if it is serious & no doctor was on duty being that it’s a Saturday. I said but the clinic is now shut all week so when do they work, no answer. I feel upset & angry 😡 but more than that I’m worried. I will write not sure how far that will get me. I don’t have a helpline but will email my consultant.

[Kate2628 in reply to Caza]

Is there any way you could take yourself to a emergency eye clinic, lve been to Moorfields Emergency eye clinic several times they will always see you.

[Caza in reply to Kate2628]

Yes, I’m going to give them a call tomorrow. If it gets any worse I’ll just go there.

[DRunnerchick]

Caza-

I am so sorry you are having issues. I have had issues with my left eye for the last 8 days. Thought maybe it was a migraine, so I took a triptan. Then it got worse after my second COVID vaccine. I happened to have an appointment with my neurologist yesterday. He ran through some diagnostics (over Zoom) and pretty much ruled out cranial nerve involvement. And since the triptan didn’t work, probably not migraine. Headache for days after the vaccine is a known s/e but I had the double vision and pressure before, afterwards all his little questions, he said if it didn’t calm down after this weekend, call my eye doctor (I’m in the U.S.) his guess is a refraction error, but would want to rule out retinal problems.

I hope you get yours sorted soon. 🍀🌻🤞🏼

D🏃🏽‍♀️

[Caza in reply to DRunnerchick]

Thanks for your reply. This started way after my first jab & before my 2nd so don’t think it’s connected. I do have a sort of headache more like a pressure pain over my left side not enough to take painkillers so definitely not migraine. It’s really annoying & interferes with my driving.

[rabbits65]

How awful fir you Caza . Whatever is going on with these doctors , it seems so unfair to leave so many people upset and poorly fir soLong . We need nice people to help us not hinder us and our recovery.

[Caza in reply to rabbits65]

So true. Our surgery has been shut throughout covid apart from the dispensary. You have to phone them for an appointment, which can take an hour or so & only if it’s an emergency will a doctor phone you back. Is my eye an emergency 🤷‍♀️

[rabbits65 in reply to Caza]

Of course your eyes are an emergency . Good luck

[Caza in reply to rabbits65]

Thank you

[Sheila_G]

That is not acceptable. Your eyes are precious. Keep ringing until you get satisfaction. Good luck.

[Caza]

Thank you. Feeling really cross & flat.

[Sarahg62]

I have been having Uveitis problems with my eye for about 6 years, with 3 flares in the last year. I asked for an emergency appointment at Specsavers recently. They were very good, and got me to Moorfields Rapid Access Clinic in Croydon. I note you are in London, are you able to get to Moorfields at White City, they have a walk in Emergency department. The Moorfields website is also very informative. There is a helpline phone number too. You should push to get seen, I didn’t realise how bad my eye was - but they diagnosed my eye problem very quickly. Good luck.

[Caza in reply to Sarahg62]

Thanks for your reply. I went to specsavers a month ago because of a burst blood vessel in my right eye they were very helpful. This left eye problem has developed since then. I don’t live in London anymore but I can get to Moorfields. I think I’m going to have to go there. I didn’t think about a website or a helpline. I’ll get on the case tomorrow thank you that’s been very helpful.

[Sarahg62 in reply to Caza]

I used the helpline in the middle of the first Lockdown. I was on hold for 1 1/2 hours 😡. Hope you get sorted. I am back there again tomorrow as my macular Edema hasn’t settled yet.

[Caza in reply to Sarahg62]

I hope you get it sorted.

[Sarahg62 in reply to Caza]

Thank you. I think White city are doing virtual appointments at the mo, worth having a look at the website today, and then get in early tomorrow morning. At least it will get you started 🙏🏼👍

[Marionfromhappydays in reply to Caza]

How frustrating and worrying for you, I had eye pain told my GP and she referred me to Bristol Eye A&E.

You could try ringing your GP for a referral to Moorfields or probably as you said just get yourself down there.

I do have an issue that the optician just wouldn't have been capable of detecting so with your eyes you just can't risk being jerked around. Not like you haven't tried, people go there for alot less.

You must be tired of trying to get someone to listen to you, you've been let down x

[Caza in reply to Marionfromhappydays]

I’m going to ring Moorfields tomorrow & see what they suggest.

[Kate2628 in reply to Caza]

Moorfields clinics and one to one appointments are now back on l had one a few weeks ago.

[Gardening53]

Hi Caza sorry to hear about your eyes can I ask wot medication your on as I had problems with my eyes on some RA medication and had to come off it xx hope you get it sorted soon x

[Caza]

I take 400mg of Hydroxychloroquine daily. Have done for 9 yrs with no problems. I have an in depth eye test yearly at the eye clinic at The Royal Free but of course because of covid it kept being cancelled. So yesterday I was geared up to having it done, last time was 2 yrs ago & it didn’t happen.

[Summerrain14]

I am so sorry to hear that you are not able to get the care you need for your eyes Caza. I work as an eye clinic liaison officer and appreciate just how worrying and frustrating it is when patients I speak to are concerned about their eyes and I do my best daily to get them access to see their consultant or the best way forward. We have an emergency system in place where many of the opticians can do the needed tests and email them across to the eye hospital which is reviewed by an eye consultant every day. The thing they look for it retinal changes with the medication you are on. If you have no joy getting an appointment at Moorfields then if you can find an optician that can do the retinal scans. If you get no where tomorrow please private message me and I will do my best to contact one of my colleagues at your local eye hospital to find the best way for getting you a much needed appointment for the tests. Gentle hugs Gail x

[Caza in reply to Summerrain14]

Thanks for that. She did take pics of my eyes & said that she would pass them on & that they would write to me with the results but in the meantime I’ve no idea what’s happening to them.

[Summerrain14 in reply to Caza]

I am so pleased that they did the tests. Sadly the people who do the tests aren’t qualified to interpret them fully. If there is something that shows up you will be contacted urgently to come in. What you could do with is speaking to a consultant though. Have you got the phone number for your consultant’s medical secretary as they can ask your consultant or one of the medical retinal consultants to give you a call. If you don’t have this information I am more than happy to try and track it down for you. x

[Caza in reply to Summerrain14]

Thank you. Yes I do have my consultants PAs number. Takes ages to get through & she’s quite formidable but I know my messages get past on to him. Looks like I’ve got a busy day on the phone tomorrow

[Caza in reply to Summerrain14]

She did say that the pics would be shown to a consultant & if there was a problem they would right to me with another appointment. When I asked her how long that would take, she said she didn’t know.

[springcross]

Hi Caza. Have you tried contacting the ECLO (Eye Clinic Liaison Officer) at the hospital? I would certainly give it a try if you can find the number on the hospitals web site or ring the hospital and ask the switchboard to put you through. Either that, or contact rheumatology and tell them what's happened and ask if they can help. That's disgraceful as our eyes are precious but it's a pity that some of these hospitals only care about their own. Good luck. x

[Caza in reply to springcross]

Summerrain has offered to find the number for me if I have no luck tomorrow.

[springcross in reply to Caza]

Yes, I have just seen Gail's post and if anyone can help it will be Gail. Good luck. x

[Caza in reply to springcross]

Thank you

[Caza]

Yes, my eyes. Well the left one only.