Camerashy

[camerashy]

Hi every one

4 years with GCA. autoimmune hepatitis. PMR.

Adrenal insufficiency. Chronic fatigue and all the little bits in between I seas taken off prednisone to try and get my adrenal glands going again but no luck so far. A couple of months ago I had acute pain in my eye and temples so my Dr arranged for me to see a new Rhuemy I went and gave my symptoms which were mainly eye and head and I mentioned that the eye was so bad I felt nauseous he explained that Nausea was not a symptom of GCA and therefore I was told it was a recurrence of migraine which I have had nearly all my life but not for the last 15 years I was told to take paracetamol and tablets for migraine. I had a blood test which was normal He did arrange for me to have a Pet scan for which I was grateful

Three days after my scan the consultant phoned me to say that the scan showed inflammation of the aorta and of the lining of the womb and a cyst on the overt and some inflammation of the throat

Since the he has organised a scan of my heart. An appointment with Gyny ENt I cannot praise him enough and just wondered if this was his way of saying. I got it wrong”!!!!

How come blood tests come back clear and yet Petscan shows all this. How do they monitor this

Can’t have a scan every time

[PMRpro Ambassador]

There are no tests that are 100% certain in the diagnosis of PMR and GCA except the temporal artery biopsy (TAB) being positive. That is 100% certain that you have GCA. But a negative TAB does NOT mean you don't have GCA, it means they didn't find what they were looking for and there are several reasons for that.

Up to 20% of patients with PMR/GCA do not have blood markers that are "out of normal range" - but that doesn't mean that they are not raised for the patient themself. Normal range is the range of results found in 95% of a large population of healthy subjects - not what a single patient can have. And some patients just do not "mount the acute phase response" as they put it. No-one knows why, it is just so.

I know plenty of patients who will tell your rheumy that nausea CAN be a symptom of GCA. Even if he hasn't met it - or ignores it when he does meet it, it can be part of GCA. Googling "GCA symptoms nausea" bring up several references - including one which cost the NHS because of a failure to diagnose. The lady had nausea amongst other GCA symptoms:

lexology.com/library/detail...

It sounds as if he has learnt something - and you were very lucky he did have some doubts and ordered the PET scan - they are not widely available as yet and I have a feeling that he MAY have suspected some form of cancer underlying the symptoms.

[camerashy in reply to PMRpro]

Further to my previous post This diagnosis come under the umbrella of Vasculitis

[PMRpro Ambassador in reply to camerashy]

Yes - GCA is an arteritis, inflamed arteries. Vasculitis means inflamed blood vessels.