Looking for a rheumatologist with an open mind.

[EggAndBacon]

Hello all, thanks for your informative posts and I wish you all a happy 2021. I am looking for a recommendation for a rheumatologist who has an open mind when it comes to PMR. I'll try and keep it as short as possible.

I am 72 and in March I started suffering from pain and stiffness, from the knees up to the waist, in the upper arms and shoulders. The stiffness was so bad in the mornings that I found it difficult to walk. However it improved by mid afternoon although the pain remained. My GP suggested that the symptoms were pointing to PMR but after my good blood test results, said it was very unlikely and sent me to a rheumatologist.

My rheumatologist will not even consider PMR as a diagnosis due to my good blood test results and has diagnosed tendinitis. I was sent to a physio but the exercises have not helped. The rheumatologist also arranged for me to have shoulder injections to relieve the pain. The pain gradually worsened during the following weeks, to a degree that I was ready to go to A&E. Fortunately after three nights of not being able to sleep, I had the first depomedrome injection in the left shoulder and four weeks later the second shoulder. These relieved the pain in the shoulders and unexpectedly (and to the disbelief of the rheumatologist) also to a degree in the other affected areas, and I am sleeping again for now. However, the effect of the injections do not last forever and the pain from the knees up to the waist is slowly returning. On my last visit to the rheumatologist, I mentioned that my symptoms were those associated with PMR, the response from my rheumatologist being that it couldn’t be PMR as my blood tests were good. I said that I had read on this forum that around 20% of PMR cases show normal blood markers but was told not to believe everything on the internet and was asked why I was questioning her judgment. I left it at that, not wanting to ruin my chances of having further depomedrome injections.

I would like to see another rheumatologist, privately if necessary, who has a more open mind and who will at least consider the possibility of PMR. If anyone can recommend one, I would be so grateful. I live in West London, Harrow, but distance is not a problem (after lockdown). Thank you all.

[Maisiek]

Hi, sorry to hear what you’ve been through : Prof Dasgupta is based in Southend and is President of this charity. You can see him privately in Westcliff. Good Luck. Jill

[EggAndBacon in reply to Maisiek]

Maisiek, thank you very much for your reply.

[PMRpro Ambassador]

Rod Hughes, Chertsey

drrahughesrheumatologyltd.com/

He has been seeing patients privately all through - he wrote an article in the Daily Mail lamenting the hospital restricting how many patients he was allowed to see. Often he will out someone he sees privately onto his NHS list if it appropriate.

There is reading in the internet and reading in the internet isn't there? These are all in the medical literature - you find that on the internet these days too.

ncbi.nlm.nih.gov/pmc/articl...

file:///home/chronos/u-d64ecfda43f8e19714f79d0bf97e5fd0ecd819cf/MyFiles/Downloads/article.pdf

racgp.org.au/afp/2014/june/...

all mention patients with normal range acute phase response (ESR and CRP).

The last one mentions "Normal inflammatory markers if there is a classical clinical picture and response to steroids". Mine was textbook - and I responded to 15mg pred in under 6 hours but I had struggled for 5 years to get a reason for my pain and disability.

Markers may lie in the normal range but still be markedly raised for you personally. The normal range is the range of readings found in 95% per cent of a large healthy population not the range that is acceptable for one particular patient. My normal ESR is 4 - for a long time during a severe flare mine ran at 16-18 which no-one would identify as raised without the context.

[EggAndBacon in reply to PMRpro]

PMRpro, thank you very much for your reply and info.

[EggAndBacon]

Miss_Diagnose, thank you very much for your reply.

[Linlang]

I live in Hertfordshire and have found rheumatology care awful but am thinking of seeing at Luton Vanessa QuickGood luck

[EggAndBacon in reply to Linlang]

Thanks Linlang.

[masieg]

Dr Hugh Jones at Parkside or New Victoria Hospital in Wimbledon - he's excellent

[EggAndBacon in reply to masieg]

Thanks very much masieg.

[Marijo1951]

I can recommend Dr Pamela Mangat. I see her at the Royal Free in Hampstead and I've found her very open-minded and willing for me to taper at my own pace. She also sees private patients at Highgate and in the West End.

[EggAndBacon in reply to Marijo1951]

Thank you very much Marijo1951.

[Unnisteffceri]

I know the feeling. Not just rheumatologists.....in my experience medics in general (although not all, just the majority) find critical thought a problem. I'm reminded of W S Gilbert's poem, 'put a penny in the slot'. What I generally do is ask more and more questions - eventually they usually give up and come around to accepting that they need to sharpen up their thought processes and consider alternatives to their narrow decision. Anyone who rejects internet sources is not sufficiently well educated to know that most refereed journals nowadays are published on the internet. So are all WHO statistics and info. Should we ignore these sources because they are published on the internet? Sorry to rant - but the lack of education amongst medics in this country is a subject close to my heart. Sorry also that I cannot point you in the direction of a rheumatologist who would be any better than the one you already have.

[EggAndBacon]

Thanks Unnisteffceri, my rheumatologist certainly doesn't like questions that take her outside her comfort zone. I like the reference to 'penny in the slot'. Clockwork figures.....