Normal blood tests

[TurtleWings]

How can I possibly make doctors understand. I’ve got all the symptoms and diagnosis to put me here but my pcp and dermatologist agree even with my vasculitis apparent my blood tests will lose the interest of the rheumatologist once I get back to one. Long delay in getting to see one. Then what?

[PMRpro]

Depends who you see - some believe in sero-negative disease.

[TurtleWings in reply to PMRpro]

Maybe after I had a stroke with no supposed evidence CT/MRI to support only to have doctors looking at me 8 years later and say you’ve had a stroke doesn’t help my confidence any. Sorry but I’ve had years of misdiagnosis and life threatening side effects from medicines. My hope in the medical field which I used to work in has taken a serious decline.

[AmyS1]

Blood tests can become normal if you are on treatment eg steroids etc.

[TurtleWings in reply to AmyS1]

I’ve been on anti seizure meds but not long term steroids. Doctors only give me steroids when the bad flares happen.

[StoicMan]

This depends a lot on your rheumatologist of which I have had three in two years. My first set of blood tests were normal (e.g., inflammation markers, renal tests) with the one exception of a cANCA test which was 5.5 (normal range 0-3) and this was used to speculate possible GPA, but he would not commit to a diagnosis without a biopsy. With my second rheumatologist, several blood tests over a period of six months were all normal and all ANCA tests were negative. However, he kept an open mind and tried me on a course of Prednisolone (20mg-15mg-5mg taper) for three months, which I found worked extremely well. My joint/muscle aches subsided and my ever-stuffy painful sinuses cleared up for the first time in years. After that he formally diagnosed me with “Limited PR3 ANCA vasculitis” and in a letter to my GP stated “Negative ANCA does not rule out vasculitis.” My third rheumatologist I would say is from the more sceptical side of the camp. Having examined me and found no joint inflammation or swelling and having seen several sets of normal bloods, I do not think he is convinced there is much wrong with me. When asked about the previous positive cANCA, he said if it were over fifty and had appeared more than once, it would be significant. However, to give him his due, he has now tried me on two courses of Prednisolone which have been greatly beneficial, but he does not want me to stay on them long term. I am currently (April 21) trying a course of Methotrexate (15mg a week), but only just reached the 6-week period when the benefits are expected to kick-in.

So as others have mentioned on this forum, it will depend a lot on which rheumatologist you end up seeing.

[TurtleWings in reply to StoicMan]

I don’t believe I’ve had ANCA tests. I’ve only seen two other rheumatologist and once the ANA came back negative it was over. Scheduled for another one but it’s months away. My ANA was positive once then negative ever since. I’ll have to look back over my labs.