Patient Knows Best

During my last flare, one of the lymph nodes in my left arm became swollen and painful. Nearly two weeks later, more nodes were involved and I was in a great deal of pain. This is the first time that this has ever happened. I had e-mailed my rheum to brief him on the situation, and when it got worse, I made an impromptu appointment to see him.

The more I thought about it, the more it dawned on me that this was the same arm I had cellulitis in, for which I was hospitalized in October (see Adventures In The ER And MPU). And the pain was very similar to the pain I had during that time. Imagine someone wrapping a tourniquet around your arm and it getting tighter and tighter. My arm was in so much pain and so tender that I couldn’t even put deodorant on. But within two days of starting an antibiotic, my arm started to look and feel much better.

I saw my rheum last Wednesday, who told me that cellulitis can often incubate in the lymph nodes, and that this was likely a secondary infection; that Methotrexate (MTX) had knocked my immune system just enough to cause the cellulitis to become active again.

Now wouldn’t it have been nice if one out of the bazillion doctors I saw would have mentioned the fact that just because cellulitis appears to be gone, it can incubate? Maybe they were worried that this information would make me paranoid and hypervigiliant. But I don’t think it would have made me any more than I already am, especially since that October hospitalization.

But this experience, as with the cellulitis the first time, made me realize that I am the main arbiter of my health, and if I don’t look out for myself, no one else will. I have to trust my instincts. I knew that what was happening under my arm was not normal. And the more I connected the dots, the more I worried that this was something serious, more than a cut from shaving or an ingrown hair. And yet, I waited nearly a week to make first contact with my rheum. I tried to convince myself that whatever was going on would resolve on its own, but instead it only got worse.

In America, the land of consumerism, it used to be that the customer was always right. Not so anymore. But if such a maxim still held, I wish the same also held for patients. After all, we keep our doctors (and the pharmaceutical companies) in business. And yet our word is often seen as hearsay. And maybe this is self-fulfilling and causes us to think that our opinions should be taken with a grain of salt. After all, I haven’t gone, and don’t plan on going, to medical school. But while I may not have a degree in medicine, I do have the market cornered on my body…most of the time, anyway…

And I think my rheum knows by now that he only hears from me between scheduled appointments if something is seriously not right, and in need of his attention. He also knows that given the original cellulitis infection, the pneumovax debacle, he is the one I go to first for anything more than routine issues.

Anyway, at my appointment, my rheum had a very “green” medical student come and talk to me first. She was asking all sorts of bizarre questions. Have I been exposed to industrial waste? Do I do monthly self breast examines? I could tell where this line of questioning was going. The “Big C.” It’s not like I hadn’t entertained that idea in my mind already – fever, swollen lymph nodes (But apparently, according to my rheum, issues related directly to lymph nodes aren’t tender to the touch. Who knew?). But given that the original node swelling had been related to a flare, I figured it had to be related to that. And not the fact that I drink radioactive sewage for breakfast…just kidding!

In some ways, I had some vague idea of what was going on. I didn’t need some med student trying to convince me otherwise. And my doctor came in, took a look, asked a few questions, and pretty much knew what was going on, too, based on all of the information I had provided for him via e-mail.

So I’m off MTX, again, and hoping I’ll be able to go back on it in a couple of weeks, once I’m off the antibiotic (Keflex).

More importantly, though, I am also reminded how much medicine is an inexact science. Doctors can only do so much, especially given the resources they have available to them. This whole re-upping of cellulitis is a perfect example. I’m on MTX so it can attempt to reign in my crazy immune system. But the catch is that if it suppresses my immune system too much in the other direction, I’ve opened myself up to a host of other issues, including pesky infections that my body is incapable of fighting off. (And as of this week, the picture for new drugs to treat lupus and rheumatoid arthritis got a bit more dismal)

So what’s the next step for me? I’m not really sure at this point. I’m hoping that I can go back on MTX, at least until my next (scheduled) appointment with my rheum in June. And from there, hopefully finding a drug that I can tolerate, does a pretty good job of reducing my symptoms, and doesn’t try to kill me in the process. But at this point, I’ve resigned myself to the fact that, that may be asking for too much. The thing I do know for sure, though, is that when it comes to my health and the care I receive, I know best!

And speaking of patients, check out the latest edition of Patients For A Moment, courtesy of Duncan Cross.