Hi. I'm new. I've recently developed the classic symptoms of PMR, but only after decades of struggling with eczema, asthma, sinusitis, allergies and steadily worsening, widespread, undiagnosed pain and fatigue (the whole sorry saga is in my profile). PMRpro and DadCue have kindly suggested I look into vasculitis.
After tapering off prednisolone, my symptoms are raging again, but my ESR and CRP are normal. I'm due repeat tests soon. What tests should I expect for suspected vasculitis? Any suggestions would be appreciated.
Dear AtopicGuy,
Since your Condition has, very clearly, Not been Fully Diagnosed then, I might suggest, that a Considerable Number of 'Tests' might need to be performed. If, for example, you had said 'I have ANCA negative Vasculitis, with Heart & Liver Complications' then I could perhaps have advised you.
The majority, of the Tests- certainly in the First Instance- will be on your Blood and Urine... though you Might, be asked, for a 'Stool (poo)' Sample perhaps. The 'Scan' Tests, may well follow. Only then will any 'Invasive' Tests be carried out- looking Within your body.
By this time however, your Doctors/ Consultants (and you yourself) will have a MUCH 'Better' idea of your Condition- and it's Diagnosis.
Please, try at least, Not to worry... You WILL be 'Fine' AtopicGuy- Without being, in any way, 'Funny' with you, WE have ALL 'Been There'. We All recognise your Fears, Confusion, Apprehension AND Just How Baffling this ALL is. Until a few Weeks/ Months ago you were a 'Normal' person.... with 'Nothing' more than the Household Bills to worry about..... I know that, we all do. (How 'Trivial' some of it all seems now....)
Feel 'Free' to contact, any of us, again- should you want/ need to. Please DON'T Worry about being a 'Nuisance', This IS What We Are Here For AtopicGuy.
AndrewT
I seem to be stuck in a catch 22. The rheumatologist won't see me unless my bloods reveal a problem and my GP won't do anything other than basic ESR and CRP.
Dear AtopicGuy,
I can only suggest One Way Out, of your 'predicament', and it's probably NOT one that you would normally employ... but it Might Work.
You need to be 'Sad' no, more than that, 'Overwhelmed' by this ALL.... so much so that you are IN TEARS.... you just can't Cope, you Really Do Need HELP.... (this is often 'done' by the Girls, far better than us, but) YOU CAN DO THIS.
Appeal to Your Doctors 'Caring Side' (and hope to God (s)he's got one!) Your REALLY 'Unsure' and you are Just Being Given The Run Around.... can (s)he PLEASE 'Help'. Could (s)he not JUST Have Some Test Done- For Your Own Peace Of Mind- Please? (how Good are you at 'Puppy' eyes?)
If, and it IS a 'big' If, the Doctor gives you an Explanation- of any sort- DO Listen. My 'Bet', will be that, by now feeling 'A Bit Guilty And Sorry, For you', Your Doctor Will Send you for ALL the Tests.
I'm SURE that you can 'Nail' this, my friend.
AndrewT
I'm ahead of you there! My GP is very aware of how low this is dragging me. I have long suspected (and since the PMR appeared, am now convinced) that my history of anxiety and depression developed from the struggle of keeping going while feeling unwell every day (see my profile). I succeeded in the sense that I have stayed in employment and off benefits. But now I am contemplating spending my pension lump sum on a private rheumatologist, simply because the Scottish NHS seems uninterested in pursuing any disease with a difficult "presentation". I know two people who are in a similar position, one my age and the other only in her twenties.