PMR Diagnosed after 21 month Tour of Medical Providers
Posted , 8 users are following.
Thanks to everyone on this site. I have only had one other post from a couple months ago, while I was waiting for a diagnosis. My old Rheumi was not a nice person and didn't think it was PMR. He told me to get a second opinion so he would have someone to agree with him. I did, liked her and switched Rheumis. With new bloodwork she has confirmed it's PMR. If PMR typically burns itself out after a couple years, have I served part of this sentence by white knuckling it for 21 months? That would be nice.
0 likes, 23 replies
kimberly04963 holly28923
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lodgerUK_NE kimberly04963
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You cannot wait for an appointment with headaches and jaw pains. These are two of the classic symptoms of GCA and left untreated, can and do cause partial or total loss of sight and once tthat happens it is not reversible.
If your both the medics you have seen so far, say it is not because of your age, they are wrong.
On this page there is a search box, type in Guidelines for PMR and GCA, failing that go the the British Society of Rheumatologists website and type in exactly the same, then download thise Guidelines and take yourself off to A&E, tell them exactly what is going on and if necessary, ask to see the Consultant in Charge of A&E.
It does not matter if we are wrong, what matters is that you do everything to save your sight.
kimberly04963 lodgerUK_NE
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EileenH kimberly04963
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If you are in the US then you have more choice I assume - either way you need to find someone to take you seriously. Wherever you are your GP can have the ESR and CRP blood tests done. If they are high it shows there is something to be taken seriously. About 1 in 5 people with PMR/GCA don't have these raised blood markers and then it must be done on symptoms. But you need to to see someone LONG before Dec 29th - if you are in the US that rheumatologist MUST have someone taking his emergencies and if you are lucky that doctor may actually be more use.
kimberly04963 EileenH
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Mrs.Mac-Canada kimberly04963
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Don't mess with your sight!!
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kimberly04963 Mrs.Mac-Canada
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Anhaga kimberly04963
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kimberly04963 Anhaga
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Anhaga kimberly04963
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kimberly04963 Anhaga
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EileenH kimberly04963
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You probably do need a bigger unit - is the Leduc one what in the UK would be called a "Minor Injuries Unit"? You do need to have a consultant in Emergency Medicine if you can find one.
kimberly04963 EileenH
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Anhaga holly28923
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EileenH holly28923
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I spent 5 years with untreated PMR - 6 years post diagnosis I suspect it is still here but I am down to 3 or 4mg of pred and feel well and able to do most things. I've never had the impression it ever went away in that time although I suppose it could have but I didn't notice as I was on too high a dose of pred to be able to say.
Kimberley - how on earth can anyone say you can't have PMR at 49? It is to be considered in any patient with appropriate symptoms over the age of 50 - that is the international guidelines I'm speaking of. How can you say you can't have it at 49 but you can at 50? And anyway, it's incorrect. There are documented cases of GCA - with histological proof - in patients in their 30s.
holly28923 EileenH
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kimberly04963 EileenH
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EileenH holly28923
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