Introduction & Newbie Question

Sometimes I've found a Dr will mention something but when I closely examine a bill or something with diagnosis codes on it, the diseases they mention are not even on it!!! Once I ask and they told me that often they mention things that are side-results of things they have actually diagnosed that ARE on the paperwork -- they do this so the primary illness is featured for the insurance company. Have you seen all these on paperwork? Maybe something like that is happening if you haven't.

Another thing that could happen is overlapping symptoms -- For instance, Chronic fatigue syndrome and Lupus overlap. If you were diagnosed with Lupus first, that would cover CFS -- but if a Dr sees you and your fatigue is the main issue, they may diagnosis CFS without checking into or knowing about any Lupus symptoms. Are all your Drs talking with each other? Sometimes we patients have to be the main communicator to let everyone know what everyone else has said.

Or some illnesses/syndrome/etc can be side-effects of medications.

Some of us are pretty sick, and have lots of side-diseases like this that are active or have been mentioned along the way. So it could be quite normal!

I'd sit down with my current main Dr and go over them and see what is really a pertinent diagnosis for today and how it's being addressed. It's quite possible that these are all accurate, but sounds like a review might be in order to calm your mind and make sure of what is primary and why and that the treatment focus is in the right place.

Try not to worry!

Angi, since I was 35 every year one of my doctors stuck some new diagnosis on to me. I'm getting to expect something new at every doctor's appointment.
I'm lucky if my rhuemy talks more than 5 minutes to me.

I know one other person with lupus but her lupus is more celiac based. She keeps trying to convince me to go glutin free when I don't have celiac symptoms.

Oh, Angi! I just now read your note and my heart (really, truly) goes out to you. Seems like you just can't catch a break!

I was also stunned to hear that there are only two rheumatologists in your state. Wow! Please forgive me if you've already thought of this, but is there any chance you could see a rheumatologist associated with a medical school in your state? I ask, because I recently switched to a rheumatologist that is assocated with a well-regarded medical school, and not only is her knoweldge base astounding, but she is personable and patient, and I can't imagine she would ever set a timer during an appointment! I have had two in-person appointments with her, and because it's currently hard for me to trek into the city to see her, she has also phoned me and e-mailed me at home. Can you believe it? I feel truly blessed to have found her, and I hope and pray that you might be able to find someone just as good.

Warm regards,
Nina