Pushing for GCA diagnosis- Recommendation for a good Rheumatologist in East Anglia

[AgathaC]

Hi folks, I posted here originally last summer when I had a reaction to my AstraZeneca jabs. My GP suspected GCA at the time but I had a clear Temporal and Carotid artery ultrasound and my bloods were in the normal range. I revisited the Rheumatology dept 4 times in Norwich and ended up paying £250 to see someone privately. Everyone said I was too young and my tests were all clear. I gave up and indeed symptoms subsided by 90% by last Christmas. Three weeks ago the stinging headaches in my temples and forehead returned along with a huge feeling of pressure. My GP is doing bloods today but can anyone recommend a more open minded Rheumatologist in my area ? I feel that the Norwich dept has written me off.

[PMRpro Ambassador]

They would have been my suggestion - you won't find many better than Max Yates for PMR and Chetan Mukhtyar specialises in GCA. You aren't too young, the guidelines do say over 50 and even that is conservative.

Who did you see? What tests did you have? What scans?

[AgathaC in reply to PMRpro]

Chetan Mukhtyar did my ultrasound and was emphatic that I didn’t have GCA and I think all roads lead back to him. I had been on 6 days of 30mg pred by the time I saw him. I also had an MRI of the cerebral veins and two eye exams. All clear. I now have incredibly sore hips which is new !

[PMRpro Ambassador in reply to AgathaC]

Rightly enough - no doctor can treat for something where there is absolutely no medical evidence. It doesn't mean though that it hasn't turned up again. I had brief symptoms of GCA: jaw claudication and scalp pain and later severe thigh muscle claudication. But the jaw and scalp pain disappeared and there are doctors who think that the initial GCA episode can just abort and go into remission. You may have had large vessel vasculitis - it only really shows on PET-CT without pred interfering, even 10mg pred is enough to suppress the result.

But just hip pain is far more indicative of PMR - and depending on what it is like and where, possibly not even that.

[AgathaC in reply to PMRpro]

Interesting about initial GCA subsiding by itself, I had symptoms but zero clinical proof. I could ask to see Max Yates I guess.

[PMRpro Ambassador in reply to AgathaC]

I feel confident in saying he will investigate - and make suggestions in what might be causing it if it isn't.

[AgathaC in reply to PMRpro]

Thanks so much, I’m pretty worried to be honest.

[Longtimer in reply to AgathaC]

When you get to see Max Yates you will be able to ask and discuss anything, asI have said on here before…..his mantra is communication, opposite to what I found with C. Mukhtar. Hope you don’t have to wait long….

[Longtimer in reply to AgathaC]

Please try him, I have found him excellent, I went to him for PMR….

Keep us posted how it goes…good luck…

[AgathaC in reply to Longtimer]

Thank you for this. This group is amazing.

[PMRpro Ambassador in reply to AgathaC]

Max is very keen on research in PMR - and cares greatly about his patients.

[casca312]

I would not have thought this forum was set up to be continually maligning a named Consultant in this way.

Having been a patient of his for more than four years I have always found him to be extremely caring and communicative.

[PMRpro Ambassador in reply to casca312]

I have just reread the entire thread twice - I see no "continually maligning a named Consultant in this way." One person said they had difficulty with him and another said they too had communication difficulties with him, That is not continually maligning him. I have been in research meetings with him - he is very fixed in his views.

[casca312 in reply to PMRpro]

I have seen three criticisms over the years by the same person and I felt from my own experience it was unfair.

[PMRpro Ambassador in reply to casca312]

Then you are equally at liberty to say that.

I would - and did - suggest him for GCA as that is his special interest. But from experience, he is extremely inflexible and once he has made a decision sticks there, Things change in PMR and GCA and a doctor who refuses to acknowledge that may be the wrong one for anyone. It is likely on a forum like this that one patient who has had a bad experience will mention it more than once as others seek advice. Those of us who have been here a long time have heard such problems aired a few times. I don't think it is maligning anyone to say they are sometimes difficult to relate to.

[jinasc in reply to casca312]

casca312

I would add that some people use the PM's service when having difficulty with a Medic.

I assure you that more than 3 have, have had similar concerns re inflexibility and it has been dealt with quietly.

Not one has doubted his capabilities in relation to his knowledge and interest in GCA.

[AgathaC in reply to casca312]

I have absolutely no issue at all with the consultant mentioned. I am very aware that I presented with zero clinical markers when I saw him last year and he undertook a very thorough examination of me with his ultrasound diagnostic equipment. He was polite and informative when I met him. However, my symptoms reappeared and no further action was taken due to that original ultrasound in April 2021. I’m asking for a second look with someone else. I think anyone would in my circumstances. I have a feeling I’m not a straightforward case, which is blurring the issue.

[Longtimer in reply to AgathaC]

That's exactly what I was.... "not a straightforward case"....and if things weren't, then it's....bye, bye.....so left to GP who didn't know how to deal with PMR....I felt so lucky to find a Consultant that researchers and is willing to listen and try different approaches.....

I wish you well, we have to look out for ourselves, health is precious....

[casca312]

I fully appreciated your position that you had no issues and hope you are able to find a solution with a different consultant.

[Longtimer]

They are all different, and we gel with some more than others, shame the first one didn’t prescribe a mattress!!

[Longtimer]

A mattress that suits makes an enormous difference!…..