Meeting up: Hello to all you lovely people. As some... - PMRGCAuk

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Meeting up

Canarylady profile image
18 Replies

Hello to all you lovely people.

As some of you will know,I ve moved to Worthing for a new job.

I m having real problems with my doctors surgery,not getting any help or support for my PMR,and was asked today what is PMR!?

Not a good start!😩.

Is there anyone who can help me find a more understanding surgery please?

And is there anyone in this area that would like to meet up with me,doing it safely of course.

I don t know anyone in this area,and feel abit cut off from everyone.

Hope everyone s keeping well.

Many thanks

Ruth

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Canarylady profile image
Canarylady
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PMRpro profile image
PMRproAmbassador

WHO asked what PMR is?

I fear that getting much more than the prescriptions for pred, referrals if required and blood tests you are unlikely to get much support from a GP practice.

Has your move gone well? Is the new employer more human than the last one?

Canarylady profile image
Canarylady in reply to PMRpro

Hello pmrpro.

Thank you for getting back to me.

It was the doctor who asked me what was PMR!!this morning,he is going to call me back later on this afternoon!?

Doesn’t t sound too promising.

I m still having problems with my right eye,so just wanted some advice on what to do,very blurred and red,having to blink a lot too.

Feels like I have something in it,but I know there s not.

I wear glasses so keeping them on and closing my left eye it’s still blurred.

Hope your keeping well

PMRpro profile image
PMRproAmbassador in reply to Canarylady

OMG!!!!!

OTOH - look at it as a wonderful opportunity to educate them! PMR is said by some to be the most common cause of inflammatory rheumatic symptoms in over

60s. And it is also said to be more common along the south of England than elsewhere - probably reflecting the fact people retire there. So he really should be more aware ...

Gove him some bedtime reading:

rcpe.ac.uk/sites/default/fi...

rheumatology.org/Portals/0/...

Canarylady profile image
Canarylady in reply to Canarylady

Just to let you know,another Doctor just called me back,and is sending me to A&E,to have my right eye checked out.

PMRpro profile image
PMRproAmbassador in reply to Canarylady

Are you having problems with it?

Canarylady profile image
Canarylady in reply to PMRpro

Yes I am,

Canarylady profile image
Canarylady in reply to PMRpro

Evening,

Just an update on my visit to A&E this afternoon,it was a good job I went when I did!i have got GCA!

I ve had blood tests and seen nurses,doctors,specialist eye doctor 2 of them,and have been put on 60mg of preds.

Have also been told I will be checked every 6 months for changes in both my eyes,I will receive an appointment next week for the rheumatologist.got there at about 3 30 and now just got home.

Fingers crossed the rheumatologist is understanding?

Have a good night

R

MrsNails profile image
MrsNails in reply to Canarylady

Good decision on the other GP! Ask to book in to see or speak to him in the future....

I’m so sorry you have developed GCA it’s not fair is it, to have both.

I hope you can get some sleep & the GCA Experts will be able to chat with you tomorrow.

Take it easy tomorrow as you’ve been through a lot but that dose of Pred should keep you going.

Kind Regards

MrsN 🌸

PMRpro profile image
PMRproAmbassador in reply to Canarylady

I did have that at the back of my mind when I asked about your eye - combined with the resistance of your symptoms. I was pleased you were being sent.

However - despite the rather dodgy start with the first doctor, the one who sent you to A&E obviously has their head screwed on the right way! I'm impressed.

If you haven't already done so - put up a new thread so the GCA experts see.

43tripandskip profile image
43tripandskip in reply to Canarylady

Don't be too concerned about your doctor's lack of knowledge. Once I'd been diagnosed with PMR, my next appointment was with a new young doctor who kept referring to a medical dictionary when he had to make a decision about tapering. It worked out all right as he was a diligent doctor and he insisted on seeing me on a regular basis. It was a bit disconcerting to watch him leafing through the dictionary, but his tapering worked out well.

PMRpro profile image
PMRproAmbassador in reply to 43tripandskip

Learning experience - when we can teach one to do it so it works it gets passed on.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

There is a Worthing Group - see attached - pmrgca.co.uk/groups/

Perhaps they need to be a bit more vocal - especially with your surgery!

Canarylady profile image
Canarylady in reply to DorsetLady

Good morning DorsetLady.

Thank you very much for the Worthing group.

Hope your keeping well

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Canarylady

Me - fine thanks.

maria40 profile image
maria40 in reply to Canarylady

I'm glad you got prompt treatment at the hospital for your GCA I know how nerve wracking it can be. Rheumatologists can be a bit of a lucky dip - hope you get a good one. I ended up being referred to a neurologist as some doubts were raised when I had a flare but he confirmed the diagnosis.

I'm in Worthing and wonder which surgery you're at. I'm at Victoria Road and always try to book with one doctor if I can get an appointment with him. I transferred from Worthing Medical Centre a year or so ago and have not regretted it.

I belong to the Worthing support group but couldn't get to many meetings even before lockdown. However, there was an excellent Zoom meeting for the Kent, Sussex and Surrey Groups earlier this week and another is planned in a couple of weeks so when I get details I could pass them on to you if you.re feeling a little better by then.

Hope you manage to get some sleep on your high dose - thank goodness they recognised it for what it is.

Canarylady profile image
Canarylady in reply to maria40

Hi Maria,

Lovely to hear from you,thank you for getting in touch.

I m afraid I m at your old surgery!!

As I live just down the road!

One lady doctor seems ok,she was the one who sent me up to A&E,so I like you am trying to keep with her.

I haven’t seen any rheumatologist yet,it was all been done through my ophthalmologist at A&E,

Had blood s taken told nothing showed up because I was already taking preds,so it has masked it,but I have pain on my head,blurring of my right eye,and wow a very painful headache over that eye and sore down the right side of my face.

So they put me up to 60 mg of preds right away and now I feel so much better,amazing!

I m glad I went now as I was feeling bad and didn t fancy the walk or drive up there feeling with such a headache,it just would go!

Hope you are feeling well now.

Ruth

Constance13 profile image
Constance13

This isn't at all funny, BUT I couldn't help laughing. We've heard of many doctors who didn't have much of a clue - but this one???😂

Luckily things have been updated now.

Keep posting on here - there's not

much our experts don't know - and if they don't they make sure they find out and we all benefit from their research and knowledge.

Be happy in your new home.💐💐🍀🍀

Canarylady profile image
Canarylady in reply to Constance13

Hi there,

I totally agree with you!

Just worries me for other people he s going to see in the future,but you do have to laugh at him!??

I shall stay clear of him in the future.

Everyone s so helpful and supportive on here,I ve learnt so much from different people and trust them with information given to me.

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