Saturday, April 13, 2013

Bedside Manner of a Sea Lamprey

If you live near Lake Michigan, you've probably heard of the sea lamprey. For those of you who haven't heard of the sea lamprey, it's an ugly, invasive fish species that has several rows of teeth and bores into it's prey.

The rheumatologist I saw on Wednesday made sea lampreys look like pitiful kittens that just want to snuggle.

The person who set my appointment said they had the records they needed. I go on Wednesday, spend the usual half hour filling out paperwork (Ow!), wait a half hour on top of that (Urgh, but that happens, not a big deal), and then the doctor told me she didn't have the records needed. It was "a bunch of ER stuff." I went to the ER once and urgent care twice. The times spent at urgent care were about my back (why I was referred there) and my feet (during care with rheumatology nurse when I was told to get an x-ray somewhere because I thought there was something wrong with my ankle). Still, those three visits do not account for a half-inch thick stack of records. That I dropped off a week before. That were supposed to have been reviewed prior to my appointment being set.

Oh, and the eighty dollar bill I received for those records. An ER visit does not account for an eight dollar records bill.

I politely apologized for not reviewing them and said I had a difficult time obtaining them. The doctor asked me if I had my appendix removed, which I hadn't. Any surgeries, like gall bladder? Nope. She left the room, irritated. I asked her if I should have my medical records corrected, she shook her head.

She said she was a difficult position because I had already started treatment. I'm not sure if she looked at the paperwork I filled out. She didn't ask me much in terms of history. She asked a few questions - have I ever had psoriasis, something regarding ankylosing spondylitis, if my eyes and mouth were dry. Then did the press on potential fibromyalgia tender points and affected joints thing - harder on the fibromyalgia points than the joints. She was mostly interested in whether or not my hands had ever swelled, and told me repeatedly that inflammatory arthritis has swelling and she did not see swelling and thus it was unlikely that I had inflammatory arthritis. In a loud and irritated-sounding voice.

I asked her what would cause what I am experiencing. She said sometimes people have vague and non-specific joint and muscle pain and they don't know why. I asked her if there was anything at all that was neither inflammatory nor vague and non-specific. She said that sometimes people have vague and non-specific joint and muscle pain and they don't know why and did I understand, in a loud and irritated-sounding voice. She said she didn't want to give me a life-long diagnosis and be stuck going on medication after medication, finding no relief. There is nothing unreasonable about wanting to find a correct diagnosis and avoid trials of expensive drugs with shitty side effects. I can appreciate that, seriously.

But, uh, why have the arches of my feet fallen and my knuckles grown larger and I can feel tendons catching on bones and now I'm taking methotrexate and the pins and needles feelings in my feet and hands magically disappeared after a few weeks? Although the better question might be why three primary care physicians and the rheumatology nurse didn't bat an eyelash at the pins and needles issue, who knows what damage was going on there...


To summarize: the rheumatoid factor was elevated, but that doesn't mean anything; the fatigue could be anything; the muscle pain could be anything; and the joint pain is a mystery - because there is no swelling. But it should be monitored, because it is a mystery after all.

Honestly, I could give a shit less if I have whatever disorder. But I'm not going through years of spending hours on the phone and paying thousands in copayments to have people tell me it's vague and non-specific. I don't know how specific I have to be when I point to my toes, ankles, knees, elbows, wrists, and fingers and say they hurt. Absolutely not. This is ridiculous. Rheumatologists are throwing darts at a wall when it comes to this stuff. I'm all okay with darts at a wall - I worked in mental health, we're all about the darts while acting scientific so we can get our insurance and grant money. But for the love of all that is holy, pay attention to the data that is available. The guidelines changed in 2010, people.

There were things she said that were perfectly reasonable, but the fury was too much. I don't want my doctor to be my friend. I'm not interested in warm and fuzziness. Just don't want to be yelled at. 

No comments:

Post a Comment