Wednesday, April 4, 2012


Since the age of 18, I've had a problem with my foot just show up randomly. It starts as a small red dot, on the side of my right foot. Over the next couple days, the whole side and sometimes part of the top of my foot will get red, swollen, hot, and excruciatingly painful to the touch and to walk on. This would go on for a couple days before it slowly went away. After the first couple times, I went to my family doctor. He said "Hmmm... we'll just see what happens with it."

It only happened maybe twice a year in the early years, so I just ignored it. But then in my mid-20s, it started happening more, and lasting longer - every couple months or so, lasting about a week. It really started to interfere with my life, because while it was going on, I couldn't sleep well (even the touch of the sheets against it would be horrible), and I couldn't walk well, if at all, because of the pain. Pain relievers barely helped. So I went to my new family doctor (new state, new doctor). He diagnosed erythema nodosum, which is usually occurs secondary to one of a bunch of other illnesses. But since I was healthy, it was more likely idiopathic. The choices were to get a ton of testing to try to hunt down the cause, or to just let it go and deal with it every couple months. I hate tests. So together we decided on the latter option.

Fast forward a few years, and I notice that it is coming in clusters. It would happen two or three times a month for three or four months, then not happen at all for another few months. During that time I was having test after test for a bunch of other issues, and I just did not want to deal with this stupid foot problem - which obviously wasn't going to kill me after all these years.  But during the few months of it happening over and over, it greatly affected my life. So my husband insisted that I go see a specialist. 

Enter the amazing team of dermatologists at Georgetown University Hospital in Washington, DC. It takes months to get  into a place like that, so the first time I got in to see them, my foot was fine. But based on my description and the pictures I brought, they said, "No way it's erythema nodosum. ... but we don't know what it is." At that point, I had an open invitation to just show up whenever it happened next (except a weekend of course). It happened to be in a quiet time, so it took many more months before I was able to get in there while it was going on. They thought it was a fixed drug reaction... but that it must be related to food because I hadn't been taking any one particular drug since I was 18. I barely ever took Tylenol. So they did a biopsy. I should note that I had been tracking it over the years, trying to find something I was doing, eating, or being exposed to it seemed connected to. Nope, as far as I could tell, it is just random.

Here was the result: "It's not a fixed drug reaction... we actually don't know what it is... come back when it happens again and we'll reevaluate... we'll take you down and present you at NIH (National Institute of Health) if we have to."  It's not very comforting when this awesome team of highly-respected doctors looks and me and says, "We don't know."

And that was almost a year ago. It's happened maybe twice since then, during times I was unable to make the hour drive to DC. Interestingly, my neurologist is thinking I have some variant of Lupus, and put me on high dose vitamin D (which is being used to treat some autoimmune disorders) about the same time I had my foot biopsy. I'm wondering if the vitamin D has something to do with the decrease in the occurrence. But those are the questions I'm sick of trying to figure out...

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