My MS Diagnosis Is In Doubt

I've always been a little bit different, so it stands to reason that my experience with MS would follow suit. I've had doubts about my diagnosis of Primary Progressive Multiple Sclerosis right from the start, because in all of the many hours I've obsessively spent researching the disease and communicating with other patients, I've never come across another case quite like mine. The neurologists have always labeled my disease "atypical", and now it seems that it might be so atypical that it's actually another disease.

Unlike the vast majority of MS patients, my MRI images have not changed one bit since my diagnosis in May of 2003. They've always shown just two lesions, a small one in my brain, and another at the base of my brainstem. The one in my brain is probably not doing anything too nasty, but the one near my brainstem is causing me tremendous problems. Here are some images of the Wheelchair Kamikaze's brain, with arrows pointing out my two lesions. Click on each image for a larger version.

Quite a winsome brain, wouldn't you say? I'm quite attached to it. Or, rather, is it attached to me? Maybe I'd best see a metaphysician...

The literal meaning of "multiple sclerosis" is "many scars", because the disease is named for the numerous scars, or lesions, that it leaves on the central nervous system of its victims. Unlike the MRI images of most MS patients, which change over time, mine have been rock stable, and rather than multiple lesions, they show only two, so my disease would more correctly be called "Double Sclerosis", if there were such a thing.

Examinations of my spinal fluid have also never shown any of the telltale signs of MS, yet my physical condition has continued to deteriorate steadily since 2003. Back then, my only symptom was a slight limp; fast forward to today and my right arm and leg are pretty much useless, and my left side is weakening, after being left untouched for the first four years of my illness.

Because my disease is so atypical, my neurologists recently decided to review my case and run some more tests. Lo and behold, my longtime suspicions about my diagnosis have been validated; the doctors now suspect that I don't have PPMS, but rather some other neurodegenerative disorder.

Unfortunately, it's not clear what I do have. The possibilities include Neurosarcoidosis, AMN, a spinal tumor (very unlikely, I'd be dead by now), PLS, Sjogren's, and a whole host of much rarer diseases, such as mitochondrial disorders. It could also still turn out to be PPMS. Quite the menu of medical delights, isn't it? Really, I'm not that hungry, I think I'll skip the entrée, check please...

Needless to say, this has all been unsettling, confusing, and scary. Most of the alternate diagnoses offer little in the way of treatment, so, like PPMS, they are currently untreatable and incurable. They're all also progressive, which paints a forbidding picture of the future. So, once again, it's time to gear up for the fight. After licking my wounds a bit, I'll force myself to choose optimism over pessimism, and then start fighting for answers. Whatever this disease is, if it's going to take me down, it's going to take me down swinging like a drunken brawler, with both fists bloodied. Well, maybe not my weak, floppy fist, but I promise, my other fist will definitely be bloodied...