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The Other Mr. T |
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These Nerves are Made for Walking
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When I was four years old, my teachers at pre-school
noticed I was having trouble keeping up with the other kids. I was falling down a lot, and when I did, I had lots of trouble
getting back up again. After going to my doctor, I was sent to a neurologist. The neurologist decided to run some tests to
see what was wrong. One of these tests I will remember forever. I remember the building in which I had the test. I remember
the room. I remember how the room was laid out. I proved it years later when my gastrointerologist moved into the same building.
The test was an electro-conductive shock test. For those not familiar with it, sensors are placed at either end of a nerve,
typically hand, arm, and leg nerves. A shock is then sent down the nerve to measure how long it takes for the impulse to travel
from one end to the other. The severity of the shock is increased until a good reading can be taken. With healthy nerves,
this feels like a bee sting, just like the doctors say. With damaged nerves, i.e. mine, it feels more like someone stabbing
you and twisting the knife. Hence the reason I have such vivid memories of the test from when I was 4. But I digress.
After the test, it was decided that a nerve biopsy should be done to try to diagnose my problem thoroughly. This is basically where they operate and take a piece of a nerve out to study and test. All was going well in the operation. It was going well until the anesthetic wore off during the operation. Then it hurt. A lot. I don't remember much about the operation other than lying on my stomach screaming for all I was worth. I had a good set of lungs for a 4 year-old. My parents heard me from the waiting room. It was decided after the tests and biopsy that I had Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Through physical therapy, I was able to put the CIDP into remission. Skip ahead 8 years. I had been diagnosed as having Crohn's disease. I was down at my Dad's over Christmas vacation when I noticed that it was getting more tiring to go up the stairs. I told Dad about it, and he told me to keep an eye on it. Eventually, it got to the point where I could barely get up the stairs at all. I even had to crawl up a time or two. I had also developed foot drop, which makes it difficult for me to even walk. Dad got me an appointment with a neurologist he knew, and we determined that the CIDP was back. The neurologist sent me to the hospital for 5 doses over 5 days of a new drug, immunoglobulin. It is given through an IV, which is why a hospital stay was needed. This stuff just flat out works. When we got to the hospital, I could hardly get out of the car. I was getting better after the first couple of days the medicine was in my system. A few days after I finished at the hospital, it was like nothing had been wrong. Unfortunately, the CIDP would not be gotten rid of that easily. My Crohn's was still giving me intermittent problems, and the CIDP was following suit. Even though there is no evidence of it, I believe the two are connected. Every time my Crohn's flares up, my CIDP is about two steps and a week behind it. You do the math. On a taper, I was able to wean off the globulin (IVIG) and get it only as needed.
For a while, they tried to control my CIDP with Prednisone (steroids). I was
on upwards of 60mg/day at one point because my neurologist was an idiot. We told him that we had tried steroids when I was
12 to possibly control the Crohn's and CIDP, and that they hadn't done shit. Did he listen? No, of course not. I reacted to
the steroids by developing Cushing's syndrome, which makes the face swell and puff up. Some friends today hardly recognize
me in my 7th grade picture. **Advice for doctors: If a patient has tried a drug before and they say it doesn't really work
for them, consider the possibility and look into it. ** Presently, I have an average of 1-2 flare-ups a year, on the condition
that my Crohn's is behaving.
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