My Life with MS
by by Pat Michael, St Louis, Missouri, USA
(Pat would like to point out some readers may find his account disturbing, but hopes that his experiences will help others in their journey with MS.)
I was born and raised in Northern Indiana, USA. I moved to St. Louis, Missouri, USA in 1961, graduated High School in 1962. I had MS before that (age 15 or 16) but did not know it at the time.
I started College at Washington University in St Louis. I felt burnt out on school right away, probably the effect of the MS, or maybe I was just lazy, can't really be sure. I dropped out of school, and I joined the US Air Force and spent 4 years growing up a lot.
I was in Vietnam some, but not in any real combat. Some of my MS symptoms showed up early on after joining and were documented so that I was able to gain Veteran's Disability status much later in life. That was really lucky for me.
I moved back to St Louis after my stint in the Air Force and started back to school at Washington University again. I brought my grade point up and changed to a less expensive school to finish my education, University of Missouri at St Louis, a public university. I was carrying a high grade point average by that time and doing quite well while working full time at our National Imagery and Mapping Agency. It was a lot of work and I was not quite able to finish my degree.
The MS had reared its ugly head by then and I could no longer maintain my concentration to continue. I had to drop out again, never to return, in 1973. I decided to make the best of it where I worked. I worked until April 1999, when I took a disability retirement, again my concentration was failing me. Backing up a bit, I was diagnosed tentatively with MS in late 1981.
I began at that point to have very serious MS symptoms, and struggled with staying at work for a time. I was having regular attacks by that time, every two months, quite cyclical. I was put on steroid therapy, there were no ABC drugs at that time. I was experiencing bowel and bladder problems, numbness, slow reflexes, and limb movement, blank spots in my vision, and diminished hearing, vertigo, you name it, I had it. That was not a fun period in my life.
Meanwhile my two oldest sons were being diagnosed with other types of neurological problems, my wife went "nuts' and was not able to deal with all that was going on. We had a third child that was born just prior to all this diagnosing. It was, I assure you, pure hell. I don't know how I ever managed to keep on top of it all, but I did.
After a couple of years I began to go into semi-remission. I was getting better and started to get back to normal, though never quite made it back then. I started working on our house, fixing it up and stayed on Steroids until 1995. I haven't taken any since, you will see why as you read further.
I eventually had to have cataracts removed and new lenses placed in my eyes in 1991. This was my first run in with side effects of steroids. I also developed hernias and had to have those repaired. In 1994, I went into the worst period of my life.
One 'fine' March morning I was up early, could not sleep because of steroids. I was reading the newspaper and my head started spinning like a top. Suddenly I had to go to the bathroom, but was afraid to get up and maybe fall. After about 10 minutes, I decided to try even though my head was still spinning out of control. I stood up and felt no nausea, and no loss of balance. it was really remarkable, and my head was still spinning like a top. It was all over in around 20 minutes. I went back to reading my newspaper and never gave it much thought until the next day. It really was sort of funny at that time.
The next morning, early as the day before, I was sitting in my chair again but I wasn't reading this time. I don't remember exactly what I was doing, but all of a sudden I went into what I call a vegetative state. My senses, eyes and all were still working, but I couldn't react to anything. Couldn't move or otherwise react to any stimulus. This state lasted approximately 20 minutes also. Suddenly I was back to normal, and that is when I realized what had happened. Remembering the previous day's incident, I called my Doctor and reported what had happened. He sent me to the hospital, and that is when a whole set of new problems began.
My doctors decided to play it safe, and put me on steroid chemotherapy for a week. That stuff stops everything, almost including your life, in those very high doses. After I got out of the hospital, I had high blood pressure, glaucoma, extreme water retention, and was in very bad shape in general, all this due to the steroids. To top it off I had to take a treadmill stress test. My achilles tendon on the left was torn during the test, also due to the steroids. I went on all kinds of medications to control all that was out of control in me. I spent the next year recovering from the worst effects of the Chemotherapy.
All the while the doctors were trying to repair my achilles tendon. It took 3 different operations including one for plastic surgery, and I was finally walking by December of 1994. Not a good year. By then I was off all the medications as well and was quickly returning to normal. That was my last episode of MS, but not the end of my recovery by any means.
I spent the next several years trying to get really back to normal. I did do a lot better and even got back to remodeling my house. The steroids were to again cause me new problems. Even though I was no longer taking them, they had a number of permanent effects on me that I wasn't totally aware of. One of those effects was bone decalcification, which led to osteoporosis and Avascular Necrosis. That is where parts of the bones die, losing their blood supply. This usually occurs in the heads of the femurs, or hip bones. In my case it affected both hips and both shoulders.
By 1998 I was doing poorly, worn out, really tired all the time and losing my concentration again. I filed for disability retirement and won it. I retired then on April 1, 1999. This began my journey on repair of the rest of my body. Since then I have had several operations to replace my hips and one shoulder.
The last operation took place last September, and I am doing great now. I have my life back in every way. The MS has not reared its ugly head in 9 years, and I am back physically, mentally (mostly), and emotionally as well. My passion for life is back and I'm moving forward again.
I can't guarantee you the kind of success I've had with the MS, but I have to tell you that you can't give up. All is not lost and you may get better with time with the right lifestyle and attitude.
Steroids aren't used to the extent today that they were on me. And, the side effects are better understood and medications are available to control all these, so don't let my story scare you. I hope this helps you not only understand me better, but helps you to ask the right questions when the time comes.