Well that was an interesting day!

[Mike1964]

Have been feeling quite rough following my return from holiday, 0 energy, scalp quite tender, some symptoms of PMR returning, tongue felt swollen, teeth/jaw a bit achy, temple's/side of face hurt, feel sore and very hot, just feeling really rough, sweaty like I have a temperature but apparently I don't and eyes feel really strange. I'm squinting a lot, rather sensitive to light, feels a bit like my eyeballs have shrunk a bit and somebody is trying to suck them out of the back of my head, today is also rather strange, I have loads of floaters in my eyes, even when they are open. Is that normal? I often get floaters when my eyes are shut but I don't remember seeing them when they are open?

So I went to A&E yesterday at 15.00 as I was starting to think "Oh dear surely not" the good news is after seeing a very kind and helpful GP she made a referral to a consultant who wanted to see me, he was with a patient and would be down shortly. Sadly this is where things started to go downhill! I was still sitting there at 21.00 having had no further contact from anybody. I did then go to the desk and politely ask how much longer I may be waiting. Within 5 mins I was called into a smaller room and given a cup of tea, was told again somebody would see me shortly. I could then hear people saying "Oh crap he wasn't booked in" a manager popped in about 22.30 to apologize for the delay and said "Somebody will see you shortly!" at 11.30 somebody else came in and said well there's nothing we can do, they won't keep you in, go home and come back to the clinic today. (I really didn't want to stay in! my bed at home is very comfy thank you!)

Full of optimism I did indeed return at 08.45 today. After another scary gateway interview with a nurse who I really don't believe had ever heard of GCA I was told "Somebody will see you shortly" at 16.00 I was brought into a side room by somebody senior? sadly she wasn't a very good listener as she kept talking over me as I tried to explain why I was worried (And a bit scared) she then brought another DR in who proceeded to tell me that basically I was spending too much time on Google, my markers were normal, I definitely and indeed couldn't have GCA (Hooray!?) in fact i couldn't have PMR either because of the (Lack) of markers. He is going to write to my GP to tell her to stop the Pred, he was nice enough to give me 4 weeks to come off of the 15mg. Sadly he too wasn't a very good listener, when I asked why I had gone from a fit'ish 53 year old man who walked 4-5 miles 5+ times a week to an 80 year old man who struggled to shuffle to the local shop in about 2 weeks he wasn't sure, he couldn't seem to grasp the significance of how the Pred had almost completely reversed the symptoms in 5 days either. Moral of the story, don't visit Eastbourne hospital! Sorry everybody for the mad rant/ramble, am feeling rather P*ssed off! But hopefully I suppose, if I manage to survive the next 3 month's and am once more a cripple, maybe my GP will try me on Pred?

[Hidden]

Omg. I would have to complain to someone!!! All those hours. Don't they understand that after a month or more in the pred that your numbers would come down and that 20% never have raised markers. I would get to gp and explain asap and ask to be referred to rheumy. I was 55 when DX and the relatively low dose if 15mg working supports what I would presume was his diagnosis? If you go again. Go to the receptionist after ir speak to someone after 30mins. What a set of numpties.

[Mike1964 in reply to Hidden]

not a good day!

[suzy1959]

That sounds terrible! I think you would be well within your rights to complain to the hospital. Hopefully you haven't got GCA, but if you had had it, this treatment would be unacceptable. I'm not sure that I would trust their diagnosis anyway, they seem so clueless!

[Mike1964 in reply to suzy1959]

Thank you Suzy. The irony is i thought I was being responsible by going to A&E with concerns about my sight!

[bunnymom]

Pardon my French but asses all!

[Mike1964 in reply to bunnymom]

Lol, I think my summery would sound better in French!

[Celtic PMRGCAuk volunteer]

Mike, that is appalling care (non-care). Did you actually mention to these uncaring people that you had an illness that was linked to another condition with a risk to your vision? Your experience needs reporting - meanwhile I suggest you get yourself to a good ophthalmologist and ask him/her to examine the back of your eyes with the proper equipment to check for any danger signs, specifically a halo effect or any problem surfacing with the optic nerve.

[Mike1964 in reply to Celtic]

The initial GP I met was very kind, she obviously understood my concerns. Every-other person i spoke to either had never heard of GCA or treated me like a complete fruit-loop, certainly no compassion or understanding at all, none of them understood the link between GCA and PMR, I was just treated as a complete time waster

[Pongo13]

Appalling and shocking in equal measure. Goodness knows how you are coping.

[Mike1964 in reply to Pongo13]

Beer!

[DorsetLady PMRGCAuk volunteer]

Hi Mike,

Absolutely disgusting- on many counts!

A strongly worded complaint to the hospital is required, but in the meanwhile can you get a referral to a Rheumy who knows about the illnesses - even if you need to go privately.

I’m sure somebody on here can give you information.

[SheffieldJane]

What an absolute nightmare. You must be despairing. A good 20% of patients never have any blood markers to speak of. Your symptoms sounded almost specific for GCA to me. I would have sought hospital advice too. I get the daytime floaters too. Something is going on. I wonder if visiting an Ophthalmologist would be a good move. I would certainly be seeking another specialist even if it meant travelling quite far. Even though you have been told that you haven’t got GCA please be alert for any worsening of those symptoms and return to A&E. It should be treated as if you were having a stroke.

[karools16]

Utterly Disgraceful!!!! Wait all day, not seeing anyone, then told to return next day. Make sure you complain, in the strongest terms. Also, take somebody with you.Wishing you better days, and doctors.

[Hidden]

What a shocker Mike. You must be so angry!! Beggers belief the dangerous incompetence of them. Perhaps they need a screen sized poster in A&E on GCA!!! Best see your doc for a rapid referral & proper diagnosis.ATB

[Hidden]

OH MY!!!! Your experience is so similar to mine! ... but I was at the Royal Sussex County Hospital in Brighton! GP sent me there with suspected GCA. After 5 hours, was told by resident A&E doctor that although my ESR an CRP levels were not crazy elevated, my symptoms pointed to GCA. They'd have me come back tomorrow to see Ophthalmologist and put me on steroids straight away! After 4 more hours was seen by A& E Consultant who said it was NOT GCA, it was a migraine. I was instructed to go home and it headache did not go away in a week go see my GP. It didn't, I didn't.. she sent me back to A&E! Nightmare!

I am so sorry you are going through this.. what will you do now? I'd be worried about my eyesight!!!!

[Jamie345]

Hi Mike why don't you just ask your doctor for the name of a recommended rheumatologist and go private for a consultation, that's what I did when no one was really helping although it was not the conditions I have now it was my back pain, within 2 weeks I had my operation and until 3 months later I developed polymyalgia and GCA, but it was well worth spending the £250 for my back otherwise I have no idea how I could have tolerated that as well, good luck and push for a proper result.

[PMRpro Ambassador]

As has been said - up to 20% of patients never have raised markers and once you are on pred they tend no to rise or take longer so the Eastbourne doctor was wrong on all counts. I do hope your GP can identify a good doctor. There are people in your area on the forum who do have good doctors and you need to find one.

And you need to make a complaint...