Thursday, June 19, 2014

My Appointment and Some Results

So I had my first appointment with my rheumatologist on Tuesday.  I walked away with mixed feelings.  She was very nice.  And everyone I met said great things about her, said I would get excellent care from her.  But I ended up getting intimidated and clamming up, not stopping her to make sure to ask all the questions I wrote down.  Silly me.

As I said, she was very nice.  She went over my history and asked lots of questions.  Then she had me change into the lovely gown and she did a quick physical exam.

Wish I'd worn socks.  Time to repaint the toenails.

Then she had me change again and brought in the other doctor, just to let him look at my eye.  I was a good sport about it, I'm used to people wanting to take a peek at it, since you're very unlikely to see it again (for the backstory on my freaky eye, click here).  Then he left and she went over all my blood test results from my regular doctor and told me about some of the tests they want to run now.

She wasn't too concerned about my blood counts, she said lots of women have low white blood cell counts.  I was a little surprised with that, since there was a correlation in what I was reading about auto immune disorders and low WBC counts, but whatever, I guess they could be unrelated.  She confirmed that my ANA was positive, but noted that she wanted to run it again, as the result depends on the person running the test (I guess her lab is more specialized in these sorts of tests so they'll be more accurate).  She also wanted to run several tests that were sort of already run before, but in a more specific, broken down way, so that she can be sure the results are clear. She also said that early miscarriages can be related to auto immune problems, so that's something they'll be looking for. Finally, she wanted to get some X-rays of my back and pelvis, since my back pain has been so severe at times.  She seemed less concerned about my knees, but said that she more suspected osteoarthritis was the cause of that pain, and that it could be that even though my blood isn't show signs of a lot of inflammation. She said we could see about X-rays on them later if needed.  I'm realizing now I should have pushed to go ahead and do that, but I got overwhelmed and just went with it.

So she gave me the orders for the blood work and X-rays and sent me off, saying that she'll see me in 3-4 months, but she'd call me when the blood work came in, which could take up to two weeks.

I made an appointment for September 18th and trotted off for my blood-letting and radiation exposure (lol).  The phlebotomy (check out my terminology) took a healthy six vials of blood before I scooted off to disrobe again (this time I didn't even get to keep my bra--underwires) and have myself X-rayed.  That was fairly uneventful other than my hip not appreciating the lack of padding on the table and my back being generally annoyed these days, but after that I was done and on my way.

Oh, and when the nurse took my temperature, it showed I had a fever. I never run a fever.  Seriously, I'm one of those people that sit right about 97 degrees all the time.  My throat had been scratchy and AJ's got a runny nose and major case of the fussy's so by the next today, we all have it to varying degrees.  My fever has finally taken a hike, thankfully, so that's a start.

I was quite surprised when my Dr. L (the rheumatologist) called me this afternoon. I hadn't expected to hear from her until all the results were in.  She said that my X-rays looked good. My ANA is still positive but the rest of my bloodwork looked okay, including blood tests specific to Lupus.   She's still waiting on a few more tests, but at this point she says that my symptoms and the positive ANA "mimic lupus".  So at this point, she's not saying I have lupus, but that there are other things that have similar symptoms.  She wants me to start taking plaquenil, which is often used to treat lupus and other auto immune issues. It prevents inflammation and should help with the joint pain, fatigue and other symptoms.  She said the medication takes awhile to work though, around three months to start helping and it will do more the longer you take it.  And it's safe during TTC and pregnancy, if we chose to pursue that.

When she called, I was holding a sleeping AJ, so again I didn't really have a chance to ask a bunch of questions.  I'd like to get more details on all this, so I'll try to do that when (if?  she didn't say specifically) she calls with the rest of the test results.  Otherwise, I can get more information at my next appointment.

So there we have it, for now.  I'm glad to find out that she doesn't think this stuff is in my head and that maybe this medication will help in the long term.  It's intimidating not to know for sure what it is or what it could become, but she seems optimistic about everything.  I feel like at least I'm dealing with a good doctor, though I need to work on pushing for more information from her. 

Thank you all so much for your kind comments on this...I can't tell you what your concern means to me, I'm really touched!  <3  This has been unexpected, but so many things are in life.  So thanks for reading and thanks for your thoughts and prayers! 


Megs said...

This is such a rollercoaster! I'm glad that your doctor validated what you've been experiencing, but obviously it can also be scary. I hope the medication really helps. Do you think you could call her up with your questions? Obviously it's fine to wait, but it might make you feel better to just call her. I'm thinking of you and sending positive vibes your way.

ADSchill said...

Oh boy. I can imagine that this is all very stressful and cause for some anxiety. I am glad you are doing these things for yourself and trying to get concrete answers. I always believe it best to know what you are dealing with and tackle it. I wish you positive results with the medication as well as the rest of your tests. I hope there is nothing serious to deal with and know we are here to unload on.
All the best.

Anonymous said...

So scary! I'm glad you're doing this - it's much better to know your obstacles than to be in the blind about them ... but so scary as well. I hope the medication helps and you start to feel better, and I really hope they can find a diagnosis for what you've been going through - preferably the best of all options. Now that you've been given what information you have, maybe sitting down and coming up with some new questions to go along with your old ones might help you when you bring it forward to your Dr...especially once you've had a bit of time to process it. Why not try calling her once you've come up with questions? Or made a follow up appointment to talk? I'm thinking of you and hoping, that along with it being the best of all options, that will also help with Baby #3! Take Care Melissa!