I grew very quickly during my childhood, which led my relatives to believe that my coordination could not keep up with my rate of growth. I was rather clumsy and my back is a little curved. To compensate for this, I went to a chiropractor, took ballet lessons, and even had to take special education classes in physical education, despite the fact I was an honor roll student. As these problems seemed to become subdued, no one took notice of them during my junior high and high school years. I do remember that I could not run as quickly as the other children could my own age and that my gait was never quite "right."
I had adapted to the little problems so well that I did not take notice of them until about ’92. I was (and still am) the single mother of two girls at the time and attempting to hold a waitress job, when, for no particular reason, my right (dominant) hand slowly went numb to the point that I could not feel it or use it for six months. I ended up having to quit the job to avoid being fired, since I could not lift a tray or even write my name. I walked my older daughter to school while pushing my younger one in a stroller. It was a mile trip one way; I simply hooked the weakened limb to the top of the stroller and used the other hand and my weight to push it. I was fortunate that my neighbor, who also had a child Beth’s age took her to school during the cold weather. I also had almost daily headaches, which I attributed to stress and the two-mile walk I took daily.
I went to the emergency room to see what the problem was. The staff did various examinations, such as blood work and muscle testing, but despite their efforts, they thought the cause was a tiny bruise on my right forearm that was the result of pulling my child out of the way of an oncoming car. No one thought to do a MRI (magnetic resonance imaging), which would have located the cause and would have resulted in treatment for me that much sooner. In any case, I went to weekly therapy and the problem seemed to disappear in six months. I was thankful to have the use of that hand back.
Some lasting effects stayed with me, however. I started to have numbness in both hands periodically with occasional stabbing pain shooting up both arms. I would take a pain killer for this and it seemed to help. I also noticed that my energy level was not what it used to be, but I still would fight it with bicycling and exercise, thinking that I was "out of shape."
During the late summer to early autumn of ’96 while working 4 different jobs, I started having problems again. The pain was back in my hands and arms to the point that I needed assistance with my writing at times and my gait appeared to be that of a heavily pregnant woman…though I was only newly pregnant with my last child. Thinking that it was due to my water gain, I was not permitted to climb stairs by my doctor. After my son was born, I quit working to stay at home with him.
During the autumn of ’98, I started having problems with my left hand. It spread to my legs so that I had a noticeable limp from time to time. Again, I went to my doctor; the series of testing began anew.
First was the blood testing, for which I told my doctor would be useless. I was right. Since it was the left hand and arm that was the problem, I went in for an EMG (electromyography). It was rather uncomfortable, and the results were inconclusive. My doctor gave a prescription for nerve pain and sent me home.
The problems did not stop; they started to escalate. I was having problems with fatigue, weakness, limping, clumsiness, and the difficulty in the use of both hands. I was beginning to have to see my doctor on a weekly basis; no matter what he tried, he could not figure out what the problem was. By mid October, I was in sorry shape and still had not been in the hospital to get a MRI done.
At this time, my gait had become a severe limp and my speech was slurred. My handwriting was so sloppy that there was no possible way that an employer would consider hiring me, since the applications turned out to be a mess. My MRI still had not been scheduled until October 17. I still was required to pursue a job although, with my physical problems, it was a waste of time for all concerned.
The attitude of the people around me did not help at all. No one offered to help, although I was having difficulty doing the simplest tasks. It was assumed that I was faking these symptoms and that nothing was truly wrong with me. They were incorrect in this assumption.
I hit one of my medical books, comparing symptoms with various diseases and came to the conclusion that my problem was either Multiple Sclerosis or AIDS. My intuition told me that it was the former; at least this was what I desperately hoped.
On Sunday, October 19, I went to the Emergency Room since I literally looked a fright. The right side of my face was paralyzed and drooping. I was barely able to walk or speak. I had lost weight down to 126 lb., which was very thin for me to the point that my clothing was literally hanging from my frame. I was having difficulty swallowing, even water, and could barely feed myself. My family went with me and my elder daughter stayed with me in the private room they had assigned to me. I asked an orderly as best as I could why they had processed me so quickly. He hesitated, but told me that I was having the symptoms of a stroke. I shook my head when they proceeded to do more blood work and slurred for them to look at the results of my MRI.
Surprisingly enough, they sent me home that night with the assignment to contact my PCP the next day. I was sent back to the hospital for testing and treatment from 10-20 to Saturday, 10-25, two days before my thirty-second birthday. I did not receive any treatment for the first two days, but plenty of testing, including and EEG (electroencephalography), Spinal Tap (lumbar puncture), and blood testing for AIDS.
The last test was the one that frightened me the most. I was actually praying that it was MS, since I certainly did not want to die. I do not think I was so thankful in my life when the results came back negative and I was formally diagnosed with Multiple Sclerosis.
I was put on a medication called Solumedrol, which is an anti-inflammatory steroid. I had never been on drugs such as this before and it caused me to hallucinate. You can imagine what I was seeing after I got home and saw the ‘Teletubbies’ for the first time. I was having ‘nightmares’ while still awake.
I slowly recovered in that I was being somewhat self sufficient and am making regularly scheduled visits to my neurologist. To this day, I have what is called Regressive/Remissive Multiple Sclerosis, since my symptoms come and go. I am on the injection treatment called Copaxone, which basically gives my antibodies ‘something else to do’, rather that to attack my Myelin Sheath on my brain and Nervous System. I try to exercise lightly in that I can keep my own home, shop for food, and care for my family.
Despite the fact that I cannot be as active as I used to be, I can:
I am not crippled and do not need even the use of a walker, since I am doing everything I can to prevent another major attack. I do, however, have a physical challenge, that I have to adapt to my lifestyle to survive. I am not working since the stress is too much for me, but am searching for something that I can do from home that will work for me. My dream is to become a published author in the future.
Note: My husband and I started a rabbit rescue program in 8-02 and have rehomed 100 neglected and abandoned domestic bunnies since then.
MY OBSERVATIONS FROM OTHER AFFECTED PEOPLE THAT I KNOW: