My first set of bloodwork came back yesterday. My white blood count was "perfect" so no infections, my "lupus test" was negative, as was every other test he ran except the SED rate test, which was very elevated. He said I don't have lupus, as if he really understands how to know that for sure. I was already set up for a holter monitor for next week to see about the arrythmias.
Then he said we could try to treat the symptoms, and to take ibuprofen. When I heard that I remembered something about it being a bad thing, or at least not helpful for someone with lupus to take ibuprofen. So, I brushed past that. Then he said he could refer me out to a specialist, I said what kind of specialist, and he finally said the word I wanted to hear, Rhuematologist. I jumped on that and will be referred this week.
Then he said to let him know of any changes or if there is anything new in my symptoms. I hesitated a bit, because at the time I was having chest pain radiating into my neck and shoulder and back, and felt awful, but, I have no faith in him believing me anymore, and knew he would just tell me to go to the ER. So, I just didn't tell him about that or about the numbness and pins and needles in my left leg.
I waited it out and by the time I went to bed it was basically gone. It does worry me, but, I have been dismissed so many times when they haven't found anything wrong, just my old mitral valve deal, and chalked it up to either anxiety or musculoskeletal inflammation.
I wish I could hand them my body when I get these symptoms and have them walk around in it for a while so they would know I am not imagining this.
Anyway, I have no faith in the holter monitor, but, will go through with it just to satisfy them. What I need is another echo, but, will wait til I see the rhuemy to get that arranged. I am looking for another primary care doc, so, who knows, maybe I will find someone who actually knows something about lupus and doesn't think they can make a final diagnosis on one set of blood work alone, and this when he never even examined me or asked me to discuss my symptoms. I handed him my documentation and have no idea if he ever read it, but, judging by his lack of concern, he either didn't read it, or doesn't believe it.