Many, many thanks to all on this forum

[CloudGazer6]

I would like to say a huge thank you to everyone here, for your generosity, frankness and advice. It has meant a great deal to me over the past few weeks whilst experiencing what this forum has let me see is the ‘normal’ of waiting to find out what will come next for me. Like so many others here I became unwell very suddenly - a few weeks ago, almost on my 51st birthday - and went from a very busy work and social life to being unable to stand for long enough to prepare a meal or get dressed, with severe pain, unable to use my hands, a complete inability to multitask and visual problems. I didn’t realise that the various sight problems I was having then were very worrying and was lucky that a specialist eye unit took them seriously. My GPs’ best attempts to make an ‘urgent’ referral took 9 weeks to come through but I am now about to have a TAB, and I’m on 60mg prednisolone following a brief hospital admission. 

My specialist is working through the various possibilities and is very open about the diagnostic difficulties presented by my age, seronegative bloods, possible additional inflammatory condition and the overlay of multiple chest and eye infections whilst I was waiting to be seen. I was very interested to read here that there is a potential suggestion about looking at symptom presentation in the younger ages with PMR/GCA. 

So, thank you - in particular to the people who have written about their return to work. I need to work full time and have little idea at this early stage what the next few weeks and months will bring but your encouragement and openness about your experiences has been invaluable to me. 

Thank you too to the person (I’m sorry I didn’t note who you were) who named the PMR ‘lurch’. I am now able to laugh whenever I topple over. 

[DorsetLady PMRGCAuk volunteer]

Yes,

You certainly have to keep a sense of humour with all this malarkey going on. Take care, and let us know how things go for you. 

[PMRpro Ambassador]

And a bit of info for your GP (which he should know but we know they don't!):

Requesting a rheumy appointment as "urgent" merely means it will be sooner than "routine" - often perhaps something like only 6 or 8 weeks sooner. If the waiting list is more than the 18 weeks that used to be the rule (now dispensed with by JH) - that's about right for what you've been offered.

Query GCA is classified as a medical emergency - that is the same as a stroke or a heart attack. He wouldn't have written to the hospital for an urgent appointment for that - he'd have pressed a letter in your hand and sent you off, probably with a blue light ambulance. Paramedics in Yorkshire are taught the signs of GCA, reminded to consider GCA as a diagnosis appropriately and take the patient to A&E.

A few hospitals have set up fast-track referrals whereby the patient will be seen within 3 working days but for most of the hospitals that tried it it simply wasn't an economical viability. However, my optician in Scotland would have phoned the eye department at the local hospital, written the letter and sent me off to the pre-warned hospital, not even suggesting I called at the GP on the way. GPs can manage to do that too - he'd have done it for the other medical emergencies.

[CloudGazer6 in reply to PMRpro]

Thank you - very helpful to know. In the end when I became very unwell when a trial lower dose of prednisolone was withdrawn that is exactly what my GP did, and I spent an interesting 9 hours on a chair in A&E. I don't envy the ED staff - the flow of patients was overwhelming for them. 

[lesley2015]

I had never heard of the PRM lurch, very apt!  I was video recording my new garden on my phone the other day and did a lurch,  straight over in a ditch my husband was digging - very embarrassing but strange to watch ..... I didn't trip just sort of collapsed in a heap, fractured my finger in the process which was really annoying and slow to heal. But as like all of of us I suspect , quickly scramble up - Oh I'm ok etc ...... inside hurting and feeling an idiot!!

At least I never feel alone with this fab forum!

[Maisie1958]

I had never heard of the PMR lurch  but was definitely  stumblely pre pred. Got very cross with myself for feeling so tired, stiff and generally miserable for months before going to GP for prompt diagnosis decided to really up my exercise, supposed to do to help with everything !  Went out for very slow run on local playing field early morning, too embarrassed to pass dog walkers, very sweaty head and red faced older lady! Took a slight detour and "lurched" in to a ditch full of nettles and brambles, never minded very sore ankle and bleeding arms  just concerned no one saw me ! Did pop up very quickly though did consider just lying there to pretend not there at all!  Still embarrassed🤕 Still can't believe I did that 

[Pipistrelle]

There's the PMR waddle too! That funny walk because your thighs are so stiff... always worse with morning stiffness. It took me months after officially going off preds and being diagnosed 'over' PMR, after two years, to relearn to walk normally. I also once fell over when pulling ivy off a tree ; the ivy snapped and I just had no ability to react fast enough to keep from falling, like in a roadrunner cartoon. Not a lurch but a tumble, I suppose! The marathon of getting a bra on also was one of those 'you gotta laugh' things!

 

[CloudGazer6]

Thank goodness I'm not the only one not able to get dressed. What on earth was I thinking wearing a pair of tights to the hospital today? I was trying so hard not to laugh every time I fell over in the clinic trying to get them back on.  I have decided that a definition of knowing you have PMR/GCA is when you choose your chic, elegant wardrobe according to what you can get back on after a doctor has examined you. 

Aha - the waddle! Mine is currently not even a waddle but a strange pigeon-stepping tiny footstep walk. My legs have just forgotten how to walk. I lost count of the number of doctors and nurses today that lost me in a corridor as they were leading the way to a consulting room or other. They walked ahead at normal healthy-person pace whilst I could only shuffle along, vaguely attempting to appear as if I always walked like that. However, it's hard to appear nonchalant while holding on to a wall.