Life Family and the Pursuit of Sanity

or… adventures in infertility and babies and family drama!

Updates of a nefarious nature February 13, 2009

Filed under: Rheumatoid Arthritis — arminta @ 7:38 pm

OK, not really, but I challenged myself to use the word “nefarious” in real life today, so there you have it.

I did hear back from the new RA doc’s office today. Here’s how the call went down:

  • Unidentified Nurse: Your lab results show that you’re very anemic.
  • Me: Really? I think Dr. W already told me that, though… There aren’t any updates that say, I haven’t been told about, yet, are there?
  • UN: Uh… no?
  • Me: Uh…no?! What about the results of the serum immunofixation test? Do I have the monoclonal immunoglobulins, or not?
  • UN: Well, the doctor didn’t write any notes about that, so I guess they’re normal
  • Me: Fax me the lab report, number is ###-###-#### *click*

Well, maybe I wasn’t THAT rude, but I certainly wanted to be. OK, I was kind of rude, but COME ON. I already knew I was anemic. It’s one of the diagnosis codes from my last visit. Sure, I’m concerned about the anemia, but I’m just a little more concerned about what is causing the anemia. I didn’t get the lab report though, but that’s a whole other story.

So, here’s what I’m assuming… the definitely cancer came back clean. Which is good. That means if it’s cancer (as it still could be) it’s not far progressed. It also means more than likely I have the monoclonal gammopathy of undetermined significance (MGUS). So, I attended some Google med-school classes and learned the following…

MGUS is diagnosed if Mutiple Myeloma is ruled out by certain conditions being met:

  • M Protein is less than 3 g/dl
  • Less than 10% plasma cells present in bone marrow
  • No Bence-Jones proteins present in urine
  • No Lytic Lesions (wholes in bones)
  • No Anemia, Hypercalcemia or Renal Failure

Now, I’m thoroughly confused. I don’t meet all of the conditions above, seeings how my M Protein spike and anemia are what started this whole nightmare. There’s been no talk of testing urine or bone marrow.

So, now I’m thinking I need to get all of my test results and take them to my family doctor and get her opinion and interpretation. The nurse who called, obviously wasn’t prepared to answer any questions. Meanwhile, I’m ovulating and am so confused. I am so confused.

Earlier in my life I would just take doctors at their word. I’d assume they knew best and would order whatever tests were necessary. Then, I spent several long years being told that my daily pain and fatigue were all in my head. Then, I spent several more long years being told that timing was the reason I hadn’t fallen pregnant, yet, but just wait it’ll happen any minute. So, I don’t really trust doctors as perfect all knowing beings any more. I trust that they are doing the best they can with what they have, just like everyone else, but I’m quite sure that if I need somebody looking out for me, it needs to be me. So, I research and ask questions. I get really pissed though when doctors give me a small piece of a large, complex, scary puzzle then don’t follow-up with all of the facts needed to put the f’ing thing together.

OK, rant over. Not much else to report, it’s just been another scared, lonely day.


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