glad and sad........gca..: Today I took leave of my... - PMRGCAuk

PMRGCAuk

20,296 members38,022 posts

glad and sad........gca..

karools16 profile image
9 Replies

Today I took leave of my lovely Neuro, who has been such a kind, understanding, friendly man. Not my decision. Have been with him 12 years, and used to live down the road from him, so I, occasionally, would see him and his family, at church.I showed him the DSNS method and he was impressed! He says the GCA has 'burnt out' I think PMRpro might have something to say about that. Anyway, he has left me in the hands of my local GP, not a decision I like, as GP knows very little about PMR/GCA. Neuro did say if headaches returned, GP should contact him.

Whilst I am glad I no longer have the 40min. bus ride to the Neuro, any more, it feels the end of an era, and I feel a little sad.I asked him if he had any PMR patients, and he said' no, they are with rheumatologists'

. I asked the same about GCA, and he said he had a handful. I forgot to ask how long

they had had it.

I feel as though I have lost a dear friend, and someone who KNEW about GCA.ps I always used to tell him that he couldn't retire until he had me off the steroids.

Written by
karools16 profile image
karools16
To view profiles and participate in discussions please or .
Read more about...
9 Replies
PMRpro profile image
PMRproAmbassador

We'll adjudge him right when you get off pred...

It is horrible when you lose a doctor you can trust isn't it. Look on it as an opportunity to train the GP. ;-)

karools16 profile image
karools16 in reply to PMRpro

My GP didn't recognise the symptoms of COPD, last year, when I was struggling for breath...inhalers and nebuliser not enough. Asked for increased Pred, ignored, and it was super senior nurse who put them up to 40mg...little too late, and hospital for 8 days. Reason why I am anxious about him, me and GCA!

markbenjamin57 profile image
markbenjamin57

Hello karools16

What a lovely, if poignant story. It just goes to show how much Trust and Faith we place in medics who not only know their stuff technically but are also supportive and non-judgemental.

Let's hope that your GP picks up the threads and looks after you just as well professionally, or perhaps refers you to a trusted Rheumy to help you with your condition if he / she can't.

I'm sure that a truly 'good' GP or health specialist will always tune-in to their patients' personal and emotional context as much as their health condition, and give reassurance in balance with facts and advice - and bring in extra help / expertise if necessary.

It's so true that good and trusted Relationships are often as important as expert knowledge in any field. I know this well in Business and Personal life. Empathy can't be measured reliably on a scientific scale - but that's not to say that it isn't powerful all the same!

Fingers crossed for you, keep us posted.

MB :-)

karools16 profile image
karools16 in reply to markbenjamin57

Hopefully my Neuro. will guide GP.

HeronNS profile image
HeronNS

I know how you feel. These days when we need a professional in our lives I say - let's get someone young who will see us out! And PMRpro is right, you can use this as an opportunity to train the GP.

karools16 profile image
karools16 in reply to HeronNS

Strangely, I feel 'bereaved', as though my 'comfort blanket' has been taken away.Maybe he will be better than I am giving him credit for. He IS a very nice GP.

HeronNS profile image
HeronNS in reply to karools16

I do understand. When I showed up for my last quarterly PMR check-in and was told my doctor was away and I'd be seeing someone else I felt just like that - like the rug had been pulled out from under me. In fact the other doctor was sweet, and if I hadn't been so taken by surprise I might have been able to ask her more things than I usually get time for with my regular GP but I was strangely floundering!

Brixhamhampster profile image
Brixhamhampster

Karools16 I feel so sad for you losing this valuable support after so many years. The comfort of having someone to turn to with this condition is invaluable. You still have the wonderful people on this forum who have been a sanity saver for so many of us. I do hope you have no further problems.

karools16 profile image
karools16 in reply to Brixhamhampster

And I could not survive without this forum!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I told my Neuro about it,too.

You may also like...

Fantastic Book for PMR and GCA

referred me to a book about PMR and GCA. My husband, 73 has been diagnosed with PMR. She...

Are there any specific scans for GCA?

Atypical PMR since Feb 2018. I spoke to a Rheumy last Friday, he was aware of the issues but had...

First Post on PMR/GCA

60mg for about 2 weeks. Since then, I have had a roller coaster life with regarding the GCA...

Is it GCA or not that is the question

Hi All , well I can safely say today has been a traumatic one , thank you PMR Pro for helping me...

GCA/PMR One Year on (?)

lower back has been a problem for about 4 years. I have read very recently in a answer from PMRPro...