GCA Worry's

[Ronzy]

Now I am 🫤 ,double vision in my best eye when I check on Macular chart, my best eye showing extra horizontal lines 😵‍💫

This morning I woke up felt as though I had been hit with a cricket bat above right temple ,eyes smarting. But I thought if I go they’ll just say..have you double or blurry vision. Now I have. My questions is in the morning do I leave the medication off

And suffer a bit more.

When I had pmr before one of my doctors advised me to lower dose before seeing

Rumi as if there no simtoms it’s no treatment.

I’ve had swollen temples for a while now

Also a problem at a &e don’t think Rumi comes in until after 8 🫤

😵‍💫 problems

🍀🍀🍀🍀🍀🍀🍀🍀

[PMRpro Ambassador]

No Ronzy - you call the doctor for an EMERGENCY appointment. If there isn't one - you go to A&E straight away. In fact - A&E is probably preferable however you look at it ...

[Ronzy in reply to PMRpro]

Thanks for that I have now called 111 and waiting for a further callback in the next hour or so, from someone who knows more about it hopefully Thanks again

🍀🍀🍀🍀🍀

[PMRpro Ambassador in reply to Ronzy]

Good - I think we will all feel relieved at that!It may be a false alarm - but better that than missing a bad situation.

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro -you need an emergency appointment.

[Ronzy in reply to DorsetLady]

Ambulance coming 👍 thanks

[DorsetLady PMRGCAuk volunteer in reply to Ronzy]

Sure you’ll let us know how you are, when you can.

[Sophiestree in reply to Ronzy]

How did you get on?

[SnazzyD]

Hello just adding my voice to say go to A&E. even if it isn’t GCA your eyes may be in real trouble for another reason that needs urgent action.

[Ronzy in reply to SnazzyD]

Mm yes That’s

[SheffieldJane]

Good luck Ronzy! It certainly would prompt me to go to hospital!

[Ronzy in reply to SheffieldJane]

Thanks everyone am still in A&E work in progress. 😱 they gave me 30 pred this morning I’m on 21.5 normally Haven’t found why I’m out of breath yet 😱

[Seacat30 in reply to Ronzy]

Good that they are checking you thoroughly.

[ClarkB]

I have double vision and have a prism on one lens, but had flashing multi coloured zig zags in my eyes last week. I went straight to A&E last Friday, after Eye Centre at hospital was closed for Jubilee when I arrived. I eventually saw a consultant, and have appointment next week with consultants at hospital Eye Centre . GCA wasn’t discussed, but my appointment next week hopefully reveals more. Had to cancel holiday, but eyes are more important. Hope all goes well for you!

[SheffieldJane in reply to ClarkB]

I would have done the same. In fact we have, the stress of short haul flights at the moment would have “ literally “ killed me as the young are fond of saying.

[ClarkB in reply to SheffieldJane]

I haven’t even considered going abroad. Am overwhelmed by the thought of getting there. It doesn’t help that I bashed my knee last October and am still hobbling , on top of everything else!

[PMRpro Ambassador in reply to ClarkB]

Airport assistance is brilliant - but I have to admit, the hassle of getting there has been putting me off a trip to the UK! And at present I haven't got a passport ...

[ClarkB in reply to PMRpro]

Flying seemed to be so straightforward. On top of everything though, I don’t seem to have the energy and feel somewhat lacklustre. I haven’t left the country since before lockdown, and went to Wales for three days in March. Due to my knee bruise I was quite restricted in my activities, and reminded myself of my mother when I took her for “runs out” in her nineties! I’ve always done long walks, so felt all the more frustrated when I couldn’t do them.

[PMRpro Ambassador in reply to ClarkB]

Same here - but i can't walk at present - fed up with it!

[ClarkB in reply to PMRpro]

Feel the same, and my partner goes off walking on his own which is fine by me, but it is frustrating that I only seem to manage hospital corridors! 🤣

[PMRpro Ambassador in reply to ClarkB]

I have to make it to the village and back or I'd starve! But even that is challenge some days.

[ClarkB in reply to PMRpro]

I live on the top of a steep hill and find it more challenging going down. If I don’t walk much then I am achy all over! My partner does the shopping as he says I spend twice as much- on so called luxury items!

[PMRpro Ambassador in reply to ClarkB]

If I'd waited for my OH to do the shopping - I would have starved!!! No choice now - me or no-one ...

[ClarkB in reply to PMRpro]

My sister in the same position. Her German husband always did the shopping and cooking. He was old school and she never enjoyed his huge meat laden dinners! Now she chooses what she likes, or meets friends for lunch!

[PMRpro Ambassador in reply to ClarkB]

There are positives! If I can't be bothered cooking - salads and cheese

[ClarkB in reply to PMRpro]

They are positives! I would be quite happy cooking for myself, when I have the energy, but we end up adapting meals or we cook separately!

[PMRpro Ambassador in reply to ClarkB]

Before OH died I was preparing/cooking 2 different meals as he ate very little I eat and I wasn't enamoured with his choices so this is luxury!

[ClarkB in reply to PMRpro]

That’s what my sister feels now. She never dared tell her husband that she didn’t like most of his meals! She is lucky in that there are some lovely shops and eateries nearby.

[PMRpro Ambassador in reply to ClarkB]

I never had a problem telling him! After he had cancer the first time 27 years ago he wanted to go back to the sort of food he'd eaten as a teenager rather than what we'd eaten as a family for 20 years! Of course the girls, brought up in Germany, weren't greatly sold on steak pie, UK sausages, bacon and baked beans and nor was I! I assume it was something to do with the chemo changing his tastes. It wasn't so bad while the girls were at home but once it was just the two of us I did get fed up with him rejecting my choices! On holiday he didn't like my choice of restaurants either. At least he was fairly easily satisfied though. I loved cooking originally - now it is just a chore.

[ClarkB in reply to PMRpro]

My reply to you just vanished!

[PMRpro Ambassador in reply to ClarkB]

Did you leave the page? HU has its moments!!!

[ClarkB in reply to PMRpro]

My hand touched my IPad and the page disappeared. Went straight back on and it wasn’t there. IPads can be temperamental! Annoying though.I used to enjoy cooking more than I do now. I don’t do anything elaborate or have people round for a meal anymore, unless a friend pops in. Half the time I have no energy though! I find that if I fry an onion, the smell sets me off and I just add things to it!

This is a shortened version of what I’d already written before it disappeared!

[PMRpro Ambassador in reply to ClarkB]

No - I think that is a feature of HU, leave the page for whatever reason and there it is, gone!I lose interest in a recipe if there are more than 4 ingredients!! Or I would have to spend more than half an hour preparing and cooking it! Luckily a lot of Italian cookery lends itself to that - and one-tray cooking is wonderful for someone on their own.

[ClarkB in reply to PMRpro]

I bought a recipe book, ‘The Green Roasting tin. One dish dinners’. I haven’t made any thing though as there are too many ingredients! I have so many recipe books but only use one or two occasionally. Staples-Ratatouille, chilli sometimes, a simple pasta, roasted vegetables- one tray! chickpea curry, sauerkraut potatoes and veggie sausages, leeks, fry ups ( veggie), vegetable soups. Sometimes it’s just cheese or beans on toast. The thing is, I should be following some kind of diet for my various conditions, but can’t stick to any, especially if foods have to be excluded. Again they aren’t always simple!

[PMRpro Ambassador in reply to ClarkB]

I always look at the preview of cookery books on Amazon - and I won't buy them unless they are 99p on Kindle! Or outstanding - haven;t seen one that fits there for a very long time! But once you get the hang, one tray cooking is easy

[ClarkB in reply to PMRpro]

I’ve spent far too much money on unwieldy cookery books, which are still pristine through lack of use. I still have a Delia Smith one with a very young picture of her on the front! Still use it sometimes..

[PMRpro Ambassador in reply to ClarkB]

I think a cousin is still using the Delia cookery course book (no idea what it was called, How to Cook maybe) he was given when he went to uni and had to cook for himself! I was never really a Delia person though I have a few of her books. I like cookery books to read - rarely use them to actually cook

[ClarkB in reply to PMRpro]

Same here though I have used some recipes from Hugh Fearnley Whittingstall’s Veg and Much more veg. Haven’t worked through the book though! Wish he was my personal chef! I was given the Fanny Farmer cookbook, in my twenties, an American latter day Mrs Beaton. Some of the vegetables I’d never heard of then!

[Pixix]

Good luck, fingers crossed for you!

[Ronzy in reply to Pixix]

Thanks pixix and all well wishes. Just got home,so busy there they consented on my very bad out of breath condition X-rays Gce blood test etc they seam to think it is more my haert as I was

Doctor say I may have a leaky valve 🥹

Doctor seamed to think he could do all he wishes in out patients witch I agreed as

I didn’t really want to be in over weekend as I know what a waste of time it can be nowt happens. So it’s be careful time 😊

Thanks all again

And BOL. best of luck 😂

🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀

[Pixix in reply to Ronzy]

Hope they deal with your leaky valve quickly! Perhaps that’s what’s been causing some of your other problems in the past few weeks…& treating it could really help you to feel better…do hope so, take care…AND please do whatever they say you should do!!!!!

[Ronzy in reply to Pixix]

Yep early night tonight so good night all Must cut back on texting 😱👍🍀🍀🍀

[Ronzy in reply to Pixix]

👍🌹🌹

[Nextoneplease]

Do hope you’re getting on okay Ronzy 😊x

Sounds like you’ve been through the mill., By the way I had a leaky heart valve or two or three, had them repaired and felt much better afterwards ( if that’s what you have).

Take care xx

[Ronzy in reply to Nextoneplease]

Thanks for that 👍😊🍀🍀