My Results from the National Institutes Of Health...

Well, it seems like I have some of the doctors at the National Institutes of Health scratching their heads a little bit. Leave it to the Wheelchair Kamikaze to keep things interesting...

According to the doctor who examined me during my visit to the NIH, my MRI results show that I should be in worse shape than I actually am. That's kind of hard to believe, because I'm really not in great shape. My right side is pretty much useless, and my left side is getting kind of funky.

The NIH doctor explained that my one and only problematic lesion is high up on my spine, at the juncture where the spine meets the brainstem, and is quite large and invasive. Since all of the signals from my brain have to pass through the real estate that this bestial lesion (henceforth to be known as "Adolph") is camped out on, the potential is there for it to cause some pretty bad mojo. Thankfully, for whatever reason, Adolph has so far not lived up to that potential. It's like I have a rebellious underperforming teenage lesion, but in a good way...

When the radiologists at the NIH first looked at my MRI images, they assumed that I was suffering from a disease more like Transverse Myelitis than MS. Not knowing my clinical history, they surmised that Adolph occurred during an inflammatory event some time ago, and that whatever disability I had acquired at that time had remained constant.

There's no evidence of any ongoing inflammation on my MRI images, so the images don't reveal evidence of active disease. When the radiologists were informed that I've instead suffered a slow accumulation of disability over the last six years that continues to this day, they were surprised. It seems that there's a disconnect between my MRI images and my clinical presentation.

In general, for most MS patients, there is little correlation between lesion load and disability. In my case, though, since Adolph is my one lesion of consequence, and it's in a very problematic spot, it would appear that the correlation between the severity of Adolph and my physical condition should be higher. Lucky for me, it isn't. Go figure...

Since I'm experiencing ongoing disease progression, and Adolph has neither changed in appearance nor been joined by any villainous friends in the six years since my diagnosis, there has to be some other process at work that is damaging my nerve fibers. Identifying that process is the million dollar question. My diagnosis could still be MS, albeit a very atypical case, especially since I've tested negative for most of the other likely candidates. I guess I just may be Wheelchair Kamikaze, international man of mystery diagnoses...

I'm now scheduled to go back down to the NIH in Bethesda on July 16 for some more testing. They're going to do some advanced MRI scans, including an MRI spectrograph, which may shed some light on the biological makeup of Adolph, and another scan that might indicate whether or not the nerve fibers within Adolph are severed.

Needless to say, I'm beyond grateful that the NIH has taken an interest in my case, and that some of the best minds in the business are involved. The NIH doctor is going to consult with my primary neurologist, who is himself a brilliant MS specialist, and share all of their findings and test data. I'm hopeful that all of this testing will prove beneficial, as traveling back and forth to Bethesda is kind of exhausting...

As I said in my previous post regarding going down to the NIH, my being seen there is really a no lose proposition. At worst, I'm contributing to the greater good and helping to advance scientific knowledge, which I hope will be of value to future victims of this horrible disease. At best, who knows, maybe all this effort will pay off, and save my sorry ass. You've got to be in it to win it, know what I mean?