Sickness rant

Reading Neurology Now Magazine tends to depress me. Not for the reasons you might think. It's not because it makes me worry about my future or brings to mind my physical limitations. Neurology Now has a lot of great advice and helpful information (and I even won their first art contest a few years ago). No, the reason it frustrates  me is because I don't know what information actually applies to me. I still don't have an official diagnosis for what's wrong with me. I have muscular dystrophy of some kind, so I've been told at the Muscular Dystrophy Association (MDA) clinic. I have had innumerable tests run, many coming back "inconclusive" which tells you nothing. I can tell you the many diseases I don't have. I can tell you what it's like to endure a pointless spinal tap. I can describe how it feels to undergo multiple EMGs, one of which the doctor was more concerned about looking at the results on the screen than the fact that he was making me bleed because he stabbed me too hard. I'm an old hand at getting MRIs--I even know the best kind of music to bring to drown out the noise. I know from experience to drink a lot of water and have something sugary to eat for blood draws.

I go to the MDA clinic once a year to get told I'm "doing fine." Maybe compared to the last patient who was drooling on herself and can't walk, sure, I'm doing great. But compared to myself, no, I'm not. Ten years ago, I could work out on a treadmill, lift weights and run a mile (albeit not a fast one). Today, I get achy and tired from walking up a few stairs. Lately, my legs have been hurting when I drive my car.

Every year, I go to the clinic, get a bunch of tests done, and feel like I'm sent off with a pat on the head. All the helpful stuff I've had to figure out on my own. No one could tell me, "Hmmm, Elisabeth, you're underweight with low muscle tone and poor circulation, you might want to invest in some sweater vests and leggings to help keep your core warm in the frigid Minnesota winters." Or, "Because your lower legs are weak, your back muscles have to work harder; be careful, you're more prone straining your back and shoulders." Nope, had to find that out the hard way. Or when the skin on the bottom of my feet broke down when I first got leg braces, I was told the skin shouldn't be reacting that way. Well, thanks, Nostradamus, but my feet ARE cracking and bleeding. Andrew's doctor was the one to suggest a cure that actually worked!

I'm convinced I have some form of Charcot-Marie-Tooth Disease (CMT), which I've been tested for twice, both times with a result of "inconclusive." That can mean anything: the blood was too old by the time it got to the lab, something didn't get handled right, the test wasn't analyzed properly, etc. Anyways, I have pretty much all the symptoms: extremely high arches, curled toes, foot drop, wasted lower leg muscles, numbness and tingling in my toes, weakened hand strength, neurologic pain (meaning, pain that doesn't result from an injury, it's the nerves misfiring). Whenever I go to my regular doctor, I always get asked if I've been tested for CMT. When I saw a podiatrist last year, she said I have the highest arches she's ever seen, and asked me multiple times if I'm under the care of a neurologist and if I've been tested for CMT. Unfortunately, I don't have an extra $16,000 laying around to pay for the genetic test. Pretty much, I just follow the advice given to CMT patients. But I'd really like to know conclusively what I have. I'm sick of the medical merry-go-round though--let's draw seven vials of blood, let's do an EMG, let's do a spinal tap, let's draw more blood, let's do another EMG, and more blood drawn. Nope, I'm done with that. I've been dealing with this since 2004, and I'm not going through anymore painful tests that reveal nothing conclusive.