They say “knowledge is power.” Power for what is left blank. In the case of coping with a syndrome that continues to progress, demanding more and more attention all the time, the power is in part to control the depression and anxiety new symptoms can bring about.
I’ve written before about my having CMT. I was first diagnosed 26 years ago. At first it was an occasional annoyance, requiring very little attention. I ignored it. Then about a dozen years or so years ago I had to get ankle foot orthotics (AFO’s) to help me avoid stumbling (CMT causes “foot drop” in your gait, which in turn leads to falling).
Eventually pain and fatigue became more and more common, particularly at the end of the day when I was worn out. I slowed down a bit and couldn’t go as far or as long as I had before. Still, I tried to ignore it all because I felt like if I gave it attention or in any way accepted it the disease would wholly envelop me and I would feel disabled.
One of the unpleasant things about having CMT are the tests used to diagnose it. They still rely primarily on a combination nerve conduction test (NCT) and what’s called an EMG. In short they shock you first, then poke you. The shock part of the tests has the technician putting a sensor on your foot and using a handheld probe on the upper part of your leg. They do a series of shocks along several easy to find nerves that run close to the surface of the skin. At each location they do a couple of tests to find the exact nerve location, then they do a series of increasingly stronger shocks to measure the electrical current running along the nerve. They use a scope to see how long it takes for the electricity to get from one place to another, and also how much of the electricity comes out the other end (velocity and amplitude). More on this in a moment.
The EMG part of the test (Electromyography) has them insert a needle with a microphone in it into the affected muscles to listen to the electrical pulses the muscles create. This tells the doctor doing the EMG about the health of the muscles – and it helps them diagnose whether any problems are related to the outer sheath of the nerves, or rather to the middle (axonal) part of the nerves. These tests lead to a diagnosis that tells if you have CMT, and if so what type it is and how bad it is.
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I learned this time that even while I do not want to go through the tests, the neurologist wants them completed to be certain that there isn’t any additional problem beyond the CMT that is hiding. He can also see if the symptoms I have seems to agree with the test results. This time around I learned that the tests can fairly accurately tell whether I have Type 1 or Type 2 CMT. And this matters because each type has its peculiar onset, progression, and symptoms.
Getting back to electronic pulse velocity and amplitude. It turns out people with Type 1 CMT have nerves that slow down the electrical impulses passing down the nerve “wires”, but the amplitude isn’t diminished terribly. Type 2 patients, on the other hand, have nerves that keep up the velocity of the pulses, but they diminish the amplitude. I have type 2. And this is the first time in all these years I pushed the doctors to tell me what type I had. Why? Because I am beginning to notice symptoms that I hadn’t tied to the CMT before that they’ve only begun identifying with CMT type 2. Type 2 can cause hearing, breathing, hoarse voice, vision, and other problems, although most of these symptoms are more rare and are overshadowed by the problems in the hands, legs, and feet.
In all of this there is good news and bad news. The bad news is that I have CMT and that it is a progressive disease that doesn’t yet have a cure. Good news is it doesn’t shorten the lifespan or affect many other aspects of healthy living. Bad news is it interferes more and more with my ability to walk around. Good news is I move faster and better with a cane. Bad news is the pain caused by CMT is continuing to increase. Good news is they have a plethora of medicines that treat neuropathic pain. Bad news is the tests confirmed my CMT has gotten to a severe state. Good news is I don’t have other non-CMT troubles adding to the grief. It all seems to boil down to a “glass half empty” or “glass half full” definition.
So the power from the knowledge gained with proper diagnosis is the ability to harness my expectations and develop my acceptance. I’m working hard to reach for the glass half full. In lifting that glass up I begin to see it is actually more than half full. My beautiful wife Farima, my children, and my friends look beyond my CMT and hold me up. My faith in God plays an integral role too. Surrounded by support I am going to grab my cane, hold up my head, and walk on…