We are like the forgotten ************* .. lots of information on net yet doctors even Rummikubs seem to know nowt or don’t care 🤷🏽♂️ Talk to people they soon look bored things you’re a bit of a Hipacondre .I’m getting a little down now🫤
I’m 84 in October male was quite fit playing badminton table tennis three days a
Week had pmr before. It was a breezy (sorry for me the pred made me fly 😀) compared with GCA now feel am going down hill fast
Had biopsy no results yet. But got all symptoms on and off.
So now got a rummy I’m on only 40 pred for next month symptoms sometimes get worse. Don’t see him for 4 weeks, no contact doctor doesn’t want to know now seeing rummy 🤷🏽♂️ I said what do I do if I had a bad flare,did not answer
And A&E are a bloody joke
Whent a month or so there . After 4 hours this doctor saw mi ,How many fingers am I holding up .. you’re ok go home 🤷🏽♂️😩😵💫
What’s the answer 🤷🏽♂️
🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀all the very best folks. And battle on 🌹🌹🌹
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Ronzy
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Ronzy, I can feel your angst! I’m 70 and it’s taken me 6 years to feel like this GCA beast has gone back in it’s hole. I do not want to see it back in my 80s!!! And, I don’t rely to much on docs these days, health care is not the same, hard to get someone who takes you seriously. This site seems to offer the most helpful suggestions how to cope. fm
You are having a horrible time, Ronzy ☹️. Don't give up. I think you can have someone with you at an NHS appointment who will help you by making sure the doctor or rheumatologist explains things properly and that you understand. This person is called an advocate. Your local council or Age Concern will advise you if this service is available. Perhaps you could give them a call and ask if someone would visit you at home to talk about your problems. Think about it.
(I know this isn't a laughing matter, but next time you're asked, "How many fingers am I holding up?" say 14.) 😉
After having my eye injections they always ask me how many fingers can you see. I often feel like giving a ridiculous answer because it is always the same - 3
Try holding the middle one up Ronzy and ask them what they can see !!! We all feel your ire Hang in there GCA and PMR really floor you and I can sympathise. I'm only 71 and feel ticked off Can hardly push my own weight up off the toilet I've lost so much strength in a year it is unbelievable. You will come through this.
Sorry I can't help you much Ronzy but my heart is with you, for what that's worth. This site is wonderful for those of us who have this very debilitating disease, it has been my life line and I don't say that lightly. I am with you. ❤️❤️❤️
Nobody really knows unless they have been through it, just like anything else really. I think my new GP is trying. He has at least got me an appointment for an MRI. Not sure what good that will do but at least it is something happening.
Replied to your second post this morning…looks like you have blood test results now. Everybody is having to wait longer for test results right now, I think! Couple of weeks ago, you were sure you had GCA…now you have been put on 40mg pred while you wait for biopsy results. I don’t have GCA, but read a bit & thought that this is the right route?? We have so many staff off with Covid at our surgery they are struggling to cope. Been informed our rubbish bins won’t be collected this week, too many staff offwith Covid, but because it’s not highlighted that we are likely to have the highest new daily rate of new cases…300,000, nobody realises that all services are greatly affected by this!! Personally, I hope they start to publicise this more & bring back mask wearing in hospitals, & also indoor spaces. We are currently in a critical state of Covid in the UK, & services are starting to crumble!! You are not alone…currently waited 3 weeks (instead of normal 10 days) to see if my husband has bowel cancer, as suspected by our doctor.
Precisely! We all need to be more patient, really! O unless you enjoy really high stress levels! Thanks, we are hopeful, but there’s definitely something wrong! There are people waiting for everything…& Govt situation will cause a lot more issues!! Breaking news, though…..! Thanks so much, S xx
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Sick of being Sick.
seen Rheumatologist 
Tapering 
Lost the plot
