My New Rheumatologist

Today I had the long awaited appointment with my new Rheumatologist.

It went well. I mean "well" as in I like my new doctor much better than the old one. He was ready for us as soon as we were checked in. We had made another list and timeline of my symptoms, but he had me tell everything to him rather than just read it. I did pretty well speaking up and talking without Mom. (She was with me, of course.) Anyway, we discussed a lot of things for a while and he took good notes. Near the end of the appointment he did a physical check.

During the appointment, as I talked about being diagnosed with Fibromyalgia, he sort of looked at me funny and went, "Hmmm." After asking exactly what my old doctor had done and said, and listening to the rest of the story, he told me that he is hesitant to agree with my other Rheumatologist's diagnosis. Apparently the pressure-point test he did was outdated, and really doesn't work. Rather, it does work, but it works on normal people as well as Fibromyalgia patients. Furthermore, some of my symptoms point away from Fibromyalgia and more towards Rheumatoid Arthritis (or something else all together).

My doctor was also sort of confused as to why my first doctor had me taking Plaquenil. (Which, according to my eye doctor and stomach doctor, can hurt the eyes and gut.) Because we don't know what is going on, we don't know what we're treating with Plaquenil, so it doesn't make sense. He recommended that I stop taking it, because it might help if I end up being diagnosed with Sjögren’s Syndrome or Rheumatoid Arthritis, but it won't do anything for Fibromyalgia or other conditions. Mom and I thought it was probably good to stop taking it, because frankly the if I can get by without a medication I really don't need the unnecessary pills on top of the handful I am required to take daily.

The doctor was really, really considerate and good at listening and explaining. He threw out a few possibilities, but really we're starting all over at step one again. It could be that my thyroid is to blame. When my old doctor talked about that, it made me really frustrated and mad because my thyroid isn't out of control. But my new doctor explained that Raynaud's Syndrome (blue hands and feet) can be caused by the thyroid, and other joint pains can come into it too. Because he actually explained the reasons to throw that out as a possibility, it didn't bother me so much. Also, it's possible that my symptoms are something seasonal, and that in a couple of years they'll melt away. Or I could have Sjögren’s. or I could have Rheumatoid Arthritis, or Lupus, or whatever. His point was that we really can't say, and he doesn't want to label me with something and then have it be the wrong thing. Which is exactly what I want to hear.

He really seems committed to the Mystery Diagnoses factor--meaning he's willing to work with me until we come to some sort of conclusion. He ordered a ton of bloodwork, and a lot of x-rays (vs. the three x-rays my old doctor did--which we aren't even sure he looked at). We're supposed to call him on Monday and schedule a follow up in three to four weeks (vs. sometime in six months that my old doctor felt like I should be seen).

Anyway, it was overall very encouraging.

Except they did take a ton of blood. By the time I got out of radiology, I was beat. I've just gotten home (four hours after we left the hospital) and basically just had enough energy to climb into PJs and curl up on the couch.

I have an appointment with my normal doctor on Wednesday for some minor things.

I did find this pretty cool little symptom checker last night, which is oddly fun to play with.

If I say, 'I will forget my complaint, I will change my expression, and smile,' I still dread all my sufferings...
Job 9:27-28

Follow-Ups and Referral

Yesterday I had a follow-up appointment with my tummy doctor. It turns out that whatever is going on in the tummy area is more serious than he thought at first. After some discussion, I decided to opt with another couple of weeks with natural treatments instead of jumping into some uncomfortable testing. I have several vitamins and other health pills to take (on top of the medication I'm already on--not that these will hurt, because it's really just fiber and other natural things, it's just a hassle). I'm supposed to try these new pills for a couple of weeks, and then we'll go from there.

I saw my eye doctor on the same day. Everything appears to be going fine, with no damage to my cornea despite dry eye and the autoimmune medicine I'm taking (which apparently can harm your eyes, in rare cases). We mentioned that we were waiting to get a referral to see the Rheumatologist. (Now that I'm eighteen, I can be seen by the one that's local.) My doctor was like, "Oh, I'll just put that in for you." We were like, "Wow, thanks!"

So I have an appointment with Rheumatology on Friday. It's sort of sad how easy that was.

I also have an appointment with my normal doctor sometime soon, but I've forgotten when.