mixed bag

I had three doctor appointments this week, and unfortunately, it resulted in a mixed bag of emotions and findings.

Monday was my appointment with the rhumatologist. She was very friendly and interested in my case. She asked tons of questions about what I may be experiencing as far as symptoms. Most of which I answered "no, I wasn't experiencing that". Then she did a few muscle strength tests, such as holding my hands apart and telling me to put them together and then the reverse, holding my shins against the bench I was sitting on and telling me to push her away, and pushing down on my thighs while I was sitting and telling me to lift her. I must have passed those tests. Not only did I push her halfway across the room, she didn't order any rhumatology labs except for more blood work and a chest xray.

She ordered 7 vials-worth of blood tests.

She also is not completely convinced that I have dermatomyositis.

What.

She can see where the dermatologist was going with that diagnosis, but she also saw way too many things that didn't support it. Like the line of bumps along my fingers. Like the fact that ALL of my blood tests have come back normal. And the blood test that showed my ANA elevated was a "minimal bump" in the scale. Barely worth noting.

I left her office with "don't worry, we'll figure this out, I'm optimistic. Come back in a few weeks after the Plaquenil has time to do its thing (it takes up to 3 months to come to full strength in my body). And we'll see what your blood test say."

I felt like there was a glimmer of hope that this might be something different. Something not as major. I tried not to think it might be something worse.

Tuesday I pissed off the dermatologist when I told him that the rhumatologist wasn't convinced of his diagnosis. He actually got pissed. She didn't run any of the tests he wanted her to. She questioned his diagnosis.

Note that he has never made mention of the bumps on the sides of my index fingers and he diagnosed me almost immediately upon seeing me with dermatomyositis.

He said that I wasn't getting better that next steps may include a CT scan to look for malignancies an a stronger drug. (even though the current drug isn't up to speed yet). He scolded me for not staying out of the sun. I had to stay as far from it as possible - even windows. Apply and reapply sunblock. He was almost yelling.

I told him I wasn't going to live in a black box. I would wear the sunscrean and cover up as much as possible, but I would not live in a hole.

He filled out a form for my next visit in 8 weeks and left the room saying that he had to have a talk with the rhumatologist. H left the paper on the counter and barely said goodbye.

Wow.

I cried the rest of the day.

Wednesday, thankfully, I had no appointments. I enjoyed the day of rest.

Thursday I saw my PCP or general practitioner, Matt. He is so mellow. I actually enjoy going to see him. We talked about the results of the tests he ran. I am a very healthy person according to him. My cholesterol ratios of good:bad were off the charts he said. He was amazed. Everything else was spot on.

I told him about my previous appointments and how the dermatologist reacted. He said I was right to be concerned about that reaction. No doctor should be offended that another disagrees with him. And he agreed with the rhumatologist that the bumps on my index fingers didn't coincide with the current diagnosis.

Then he said that he had just met with a group of dermatological pathologists. The lead is nationally known and tours the country giving talks, etc. They told him that if he ever came across an odd or cool or exciting skin case, to send them photos and a back story and they would investigate it.

Lo and behold - here I am!

He took all kinds of photos and asked me questions to write up the back story...including what types of "outdoor chemicals" have I been exposed to. That was interesting. "Outdoor chemicals"? Like pesticides and auto stripper and paints. I told him I grew up on a farm and probably got crop dusted more than I should have. He took tons of notes and said he'd send it all off.

So I left feeling hopeful again.

Thankfully I don't see another doctor for 8 weeks...unless my nerves fuck up my flora:fauna ratio...

I can't wait to hear what the pathologist team comes back with. There will probably be another biopsy, but I'm ready and willing to hear another opinion. Another opinion means more options. I'm always good with that.