Thanks for now: I have been referred to the... - PMRGCAuk

PMRGCAuk

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Thanks for now

krillemy profile image
13 Replies

I have been referred to the neurologist at the hospital as there seems to be consensus among doctors (third opinion) and my physiotherapist that it must be something else that PMA. Thank you all for the support here, and I will be back if they are wrong :)

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krillemy profile image
krillemy
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13 Replies

Good luck! 🌻

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

If they do find it’s something else please let us know. It might help us advise other patients in the future who’s diagnosis may be problematic.

krillemy profile image
krillemy in reply to DorsetLady

Yes of course

SheffieldJane profile image
SheffieldJane

Good luck with a correct diagnosis and positive medical help.

Good Luck 🍀 Please let us know how you get on 🍀

PMRpro profile image
PMRproAmbassador

But do tell us what they decide it is. And if they are stuck - Berit Nielsen at Aarhus has been suggested to me - she is involved with PMR research I gather and has published on the heterogeneity of PMR. If she can't recognise a slightly different presentation who could?

krillemy profile image
krillemy in reply to PMRpro

Thanks - I will check her out - :)

krillemy profile image
krillemy in reply to krillemy

hmm.. she part of this new draft guidens from the Rheumatologist that just came out danskreumatologi.dk/wp-cont...

it is in Danisk, but you can google translate. On page it states: "PMR is not considered a vasculitis disease, but occurs frequently with GCA. There are imaging diagnostics

evidence that PMR is a syndrome with elements of joint capsulite, arthritis, bursitis, tenosynovitis and enthesitis." on page 23 it say"The prerequisites for referral of a patient to PMR rheumatologic assessment are (Table 2):

1. Age> 50 years (often older) AND

2. Unexplained, proximal, symmetrical muscle pain most often <12 weeks duration AND

3. Unexplained, elevated CRP and / or SR

4. If not all 1-3 are met and the suspicion of PMR is maintained, then the doctor may choose to contact

colleague in the rheumatology department and confer the basis for referral." I guess this is why they will not accept the referral to the hospital. The suggested tapering scheme is also very aggressive. Strange the way a small country goes solo like this!

PMRpro profile image
PMRproAmbassador in reply to krillemy

How bizarre - because it is wrong. How many authors?

in reply to krillemy

This may interest you at the moment. I can't get the full article as you have to subscribe, but I saw this on my newsfeed and I don't /can't subscribe to everything I come across!!!

The title suggests there is no communication from Danish Doctors (not limited to them I would argue). And they offer no dignified or kind remarks.

thelocal.dk/20191126/confus...

PMRpro profile image
PMRproAmbassador in reply to

Sounds a bit like German doctors used to be.

I managed to read a fair chunk by repeatedly going there and being quick to scroll. It wasn't complimentary really!!!

in reply to PMRpro

Yes that's what I did. By the 6th go it seemed to be cutting me off more quickly so I gave up.

Whitner profile image
Whitner

Best of luck to you krillemy! Hope you have answers soon.

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