Posted on October 31, 2013
There is a scene in ‘The Dictator’ where General Aladeen changes the words positive and negative to “Aladeen”. So there is mass confusion that Aladeen has the same meaning. There is then this scene in a doctors office where a patient is told he is HIV Aladeen. His reaction is priceless, hilarious, and spot-on. Check it out here:
I received some test results yesterday. They were for a skin biopsy. Skin biopsies are easy, but memorable tests. So you are left eagerly awaiting the results. A doctor will numb your skin (for me it was in two places) and they take a cookie cutter like punch and punch out this small 3mm hole. It is really weird to see a small log of your skin come out. If you’re curious, Google Skin Biopsy Punch. The first row of photos aren’t gross, just educational. After that… pretty gross, so don’t scroll down.
So SuperNeuro calls with the test results yesterday, and I was told quickly they were positive. And then, get this… we had a wonderful conversation! When the call ended, all I could think about was how devastated I would have been by any sort of positive test result a year ago.
I feel that in my lifetime, I have learned that test results are black and white. Negative = go on with your day, go to the park. Positive = panic and terror, close the windows, crawl into bed. Much of this was probably ingrained in me when I learned my brother had cancer (he is 100-million percent in remission now). But a lot of it is cultural. It wouldn’t make good TV to have a character get a good test result and then go to the beach and yawn. There would be no Breaking Bad without a positive test result.
I’m learning that most tests aren’t so black and white. When I first got sick, I would get an MRI or an EMG and I wouldn’t be able to sleep, I’d make myself sick. The doctor would say my results showed ‘Demyelination’ and I would immediately think ‘I’m dying!” But in reality, Demyelination is a progression of my nerves verrrryyyyy sllllooowwwwlllllyyyyy getting worse. And I should have expected this, because I physically felt it.
The results of the Skin Biopsy showed the presence of something called Small Fiber Neuropathy. SFN’s occur when the sensory neurons in your skin get damaged. For some time now, I have been struggling with odd creepy crawly, stretching, tickling sensations. I thought it could be restless leg. We now know it is SFN. So that’s what I learned yesterday.
Anyway, as previously I mentioned, it was a good conversation. It felt like a brainstorm session. I felt I was able to convey my goals for treatment and diagnosis moving forward. We discussed a new study that had just come out that fits my diagnosis perfectly:
We mostly spent time thinking curiously about my medical mysteries. The reason I’m a medical mystery today is that my EMG shows issues with my Motor Neurons only. My Nerve Biopsy confirms this and shows Demyelination. But my skin biopsy shows Sensory Neuron damage. Why no sensory damage in my EMG/Nerve biopsy? I’ll tell you why. I’m special. I’m considering diagnosing myself with Special Snowflake Syndrome.
Anyway, lesson of the day today? Most test results aren’t scary. They’re often very interesting. What I’m dealing with now is the urge to want to know everything. This has consumed my life in so many ways. After I got off the phone with SuperNeuro yesterday, something very big didn’t happen. I didn’t hop onto Google. I spent some time with my pup, chatted with a couple of friends, and then gratified my grandmother in her QVC habit. I’ve got some merino wool socks coming my way!
After I got my results, I spent some time with Hanky. I dressed him up in his Halloween giraffe costume.