Have I got the worst doctor ever??
So...I was diagnosed August 17th with Lupus by my primary care physician.
What I was told was the last test came in, she called me, and she told me.
I asked her flat out, "are you SURE?" and she said yes, and I said, bummer.
She told me I should come back in three months to have my organ functions tested.
SO, it's a little early but I was concerned about the upcoming dentist appt. I had, and also my lungs are aching.
I had some questions, and thought I'd make an appt. and get the organ tests done all at once.
Well, after some phone tag, a nurse comes on the line and says to me, tell me more about your lupus diagnosis.
I said what do you mean? She says, tell me what the doctor told you.
I did, and she says, well, according to your chart, it's not certain you even have lupus.
She said, the doctor says she isn't actually sure and needs to do more tests.
I said, that is NOT what she told me.
For crying out loud, I've told all my friends, my family...I've spent lots of money on books, I've joined this support group.
I've been living the last three months as someone with lupus, and now you're not even SURE?
By this point I'm so upset I can't even talk anymore, so my mom gets on the phone.
The doc tells her, well, she thought she'd spare me and not put me through the stress of more testing right then.
Wtf? Like, telling me yes, you're SURE I have lupus and then out of the blue saying, no you're not sure isn't stressful?
I just want to know one way or the other for sure and have a diagnosis!
If I don't have lupus I just dinked away 3 months of my life feeling like crap, when I could have been trying to find out what else was wrong and maybe getting treatment for it.
Doc says, well, you can come in and I'll do the additional testing...I guess it's the anti-double strand DNA thingee?
And she wants to test for antiphospholid antibodies?
She then backpedals and says, well I'm 99.99% sure you have lupus.
She apologizes three times for the "miscommunication", and I said, well you know...I really don't know if I want you doing the testing.
You can't even remember what you told me 3 months ago, you tell me one thing and then say another, you can't find my chart, you can't remember anything in it...this is my life you're messing with, and I want a referral for a specialist.
SO....until I can get in to see one, I have no idea right now what's going on.
I have so many of the symptoms, it explains so much...I feel sure I have it, and I'd feel better if I had an actual diagnosis on file.
On the other hand, if I don't really have it then I'm back to square one.
I'm sick with something, but then I won't know what and have to start all over...maybe it would be something less worrisome, or maybe something worse.
I'm so stressed out right now and I can't believe doctors can pull this crap on patients.
And in the meantime, I have no answers about my dentist appt. so I cancelled it.
My chest and lungs still ache, and I'm so angry, upset, confused and tired I don't know if I'm coming or going.
GRR!!! Whoever posted about hating doctors, I'm right there with you.
Ita erat quando hic adveni