Dr. Appt and Test Results

[NikkiNicole]

I saw the Rheumy yesterday. He asked me all my symptom questions again, felt the joints that were bothering me at the moment and sent me off to the lab for another round of bloodwork (CBC, ANCA, Kidney funtion, Urinalysis, Rheumatoid Factor). One by one, the test results trickled back in and I was getting frustrated!!!
My UA was wonderful (I drink a gallon o' water a day), my kidney function was normal, CBC was OK but there was a slightly elevated platelt count and ... then the ANCA finally came in today. It was off the charts.

Not sure what that means for me. I know how I feel, I know what's wrong with me ... but is that enough for him to start treating me. I know they need a tissue biopsy but ... my lung biopsy had infectious granulomas not inflammatory so they won't use that. My doc would have given me the meds yesterday but ... he said he didn't want to treat me with meds for a "life threatening condition" unless I had that "life threatening condition"

My ANCA has been steadily increasing since this all began. I know that's not always a reliable indicator but ... that's all I've got right now besides the symptoms that are driving me nuts.

So that's where I'm at now. Hopefully my doc will call me after I get out of work today. If I am to be treated, I'd like to start ASAP.

[Debbie C]

Hi Nikki, Did the Dr. say anything about yr anca results? That is a BIG factor that something is wrong. I wouldn't be waiting for him to call me ,get on the phone and find out what the next move is now or better yet,get yourself another dr. that knows what the heck he's doing. You definately can't keep going on like this. What kind of infection do they think you have in your lungs ?

[NikkiNicole]

The only test that was high was the ANCA. So, he says since my kidneys aren't involved he wants me to just start with 20mg prednisone a day and call him at the beginning of next week with an update on how I'm feeling.
they did my lung biopsy in February and believed it to be leftover from pneumonia that I had.
Guess ill see what happens with the prednisone. I doubt it will make this all go away.

[chrisTIn@]

Guess ill see what happens with the prednisone. I doubt it will make this all go away.

I guess Debra is right. You need to take action, for your own sake.

[pberggren1]

Yes, we have to be our own best doctors.

[drz]

Yes, we have to be our own best doctors.

We have to be our own advocates or have some one advocate for us most of the time. Some times we need to advise our medical staff on what we think it wrong and what treatment has worked for what ever seems to be going on. This shouldn't be necessary when we are under direct care of experts or staff experienced in treating GPA once we are correctly diagnosed. We always need to consult with our treating staff to keep informed about about status and treatment; but we are limited as to what we can do for treatment unless some physician writes the necessary orders.