Laurie Jean submitted her story to this website in 1997. The following is an excerpt from Laurie's Journal. Please visit her CIDP Information Website.
This is a true life story, of my own ordeal, that leaves many questions left to be answered, with great probability that they never will be. No, this is no exciting or heart gripping story of an accident or near death experience that I have to tell and it sure is no fairy tale fantasy.
The story of my disease and later disability all starts in August of 1990. This month of new symptoms that are somewhat ignored come back to me all the more vividly each time I think about them. The first weekend of August was the ever busy and very tiring Pierce County Fair that my brothers and I have taken part in with our horses and other activities for so many years. During this weekend I experienced a fall with my horse that caused little known results at the time. Since this weekend is so busy, one doesn't think twice about being tired and a little sick after, which looking back, may have been some of the first signs of a problem.
During the next couple of weeks I began to lose weight. As a fifteen-year-old girl, concerned with my body and looks, I figured this was little to frown upon. Then, as volleyball practice began, I hurt my ankle during a normal practice, eventually causing me to drop out for the season. This caused some worry. I had very little energy and continued to lose even more weight. I went to the doctor many times, trying to fix my ankle, then finally went to an orthopedic specialist who said there was nothing wrong with my ankle. Despite this reassurance, I still knew there was something wrong with me.
Weeks followed and my parents continued to worry. I was taken to the doctor. I tried to explain my problems, lack of appetite and energy. He prescribed appetite medication, which never did work. I could sense from the people around me that they felt this was my doing. I had no doubt that I was in the midst of a situation I could not control.
The months from September through January are less vivid. I know they were filled with doctor's visits and many sleepless nights of worry, not only my own but also my parents'. There were continued false rumors around my school about me that made the unknown even more unbearable. It was a very hard time, thinking I had friends, only to find out many months later that it wasn't quite that. There are many times I thought seriously about just giving up on life altogether and without strength from God, most likely I wouldn't be here today. Eating was a big problem, because I had no appetite and was sick when I did eat. I tried so hard to get out of eating with the family in those months because I knew they were all watching every bite that went into me and eating for them was only making me feel worse. I know now that they were only concerned about me, but it was very hard for me to see this then.
Through the following months I continued to sleep even more and eat less than imaginable. It finally got to the point that I could barely get through the day. I can remember coming home from school, falling asleep on the couch, rarely joining the family for supper, only getting up in time to go back to bed for more sleep. There were many nights that my mom and brothers followed me upstairs to my room to make sure I was going to be okay.
The next memories, although not at all pleasant, are crucial to finding out the cause of all previous problems. In January, a county social worker came to school one day and told me, also wanting confirmation, that I was being abused. These horrifying charges were reported to the county and caused a great deal of heartache for my family. To this day I do not know for sure who made this charge, but I have a pretty good idea. I don't think they realize the trouble they caused. But, on the positive side, I was finally referred to a neurologist through my family doctor.
I don't remember my exact thoughts on going to yet another doctor, but any positive hopes for help were drained the moment I met him. I know that without my mother there, I would have surely left. He later said that his attitude of me "wasting his time" was in response to the social worker calling him before hand, telling him I had a weight problem and wasting his time. After a brief medical history and physical, he then did one of the most horrible medical tests created. It's called an EMG, and what it consists of is sticking needles into your muscles and testing the nerve action between the muscles and nerves. It was during this test that he finally settled down, telling me that I did have something wrong with me. This test showed that my nerves were damaged and told me this was nothing I could have caused. It was a disease called Guillain-Barre Syndrome. He also said that he knew very little about it. In fact, it's rare to many doctors and that's why it wasn't caught. He wanted me to go to yet another hospital.
You cannot imagine the huge sense of relief that came from hearing this after going through so much. I figured that everything would soon be over and this would just be like a bad dream I woke up from. I can remember thinking that since they had diagnosed me the rest would be simple; treatment would take over and renew my life. I still wonder what that would be like.
In March of 1991 I was finally admitted to the University of Nebraska Medical Center (UNMC) where I went through a week of horrible tests, poking, and prodding. I had doctors from every possible area to either find out what they thought was wrong with me or confirm what another had said. I had so much blood drawn from me and tested that it isn't even worth thinking about. After a week of tests and my persistent requests to get out of there, they finally let me out. At this time they had no idea or confirmation, and had my blood being tested all over the country. I would love to have a taped conversation on what the doctors said when they came upon my file or the group conversation at the end of rounds! By the way, I am still waiting for a follow-up on the doctor that told me to remember these words: red, five, piano, white. Where are you??
After going home, I was sicker then ever and had to be taken care of by my mother and family. It wasn't until that time that I lost the use of my arms. I didn't return to school the rest of my sophomore year but finished most of my subjects, although I don't remember how. Most days were slept away, with the waking hours doing school work or trying to eat.
Turning sixteen, in the beginning of April, was not the great "Sweet 16" party I had always dreamed of. In fact, it is now just a small group of pictures that bring tears to my eyes. I look at those pictures, think about how bad I was at that point, and I also try to think of the positive, about how far I've come. I didn't get to have a great celebration, besides with those closest to me, and remember thinking that I'd wait to celebrate when I got better. I'd still be waiting with that attitude.
In the middle of April my doctor at the Med Center basically said that they could determine no other cause to my illness and weakness besides the original diagnosis. However, the form of Guillain-Barre that I was ultimately diagnosed with is rarer; it is Chronic Idiopathic Demylinating Polyneuritis (CIDP).
CIDP is much like GBS, in which the damage is on the insulation of the nerves of the peripheral nerves. But the onset of these two nerve diseases is very different, with CIDP taking many weeks or months to deteriorate and GBS taking just a matter of days. GBS is also more severe in that during its onset, breathing and other main organs are more frequently affected. The course of CIDP is much longer, varying with each person from months to years. It is also more likely with CIDP that there are residual, long term effects. The treatments of Plasma Pheresis and IVIG are used much the same, although a coticosteroid, such as Prednisone, is used more in CIDP than GBS.
I don't really remember what I felt at this time, if I felt relief knowing what was wrong with me or if I was more frustrated, knowing that I was diagnosed with such a rare and little known about disease. In Guillain-Barre the insulation of the nerves is damaged and thus prevents the signals from the spinal cord and brain to the muscles of the body. Many muscles can become affected, both voluntary, like the arms and legs, and involuntary, such as breathing. The specific cause is unknown and the course of the disease and treatment vary greatly from patient to patient. In my own case, all different parts of voluntary muscles are affected and treatments include anti-inflammatory steroids, Plasmapheresis and immune-boosting Intravenous Immuno Globulin (IVIG). The recovery rate is very high for GBS with recovery within months to a year, and few or no side effects. CIDP plays many different courses, with weakness and improvements varying widely. Early diagnosis and treatments play a large role in both of these cases.
In May of '91 I began Physical Therapy in order to gain passive range of motion and as much strength as possible. P.T. has continued in various amounts since then, varying from three times to once per week. I was doing well, and had begun to improve until the end of '92. It was then that my medication was messed up from decreasing too rapidly from the large dosages that I had been on. Physical Therapy has taken me to know many different therapists, facilities and types of activities.
Every time I think that things are getting nowhere, I have to remind myself about the huge gains that I have made, despite the slowness of it all. To look back to six months ago shows me the big picture, bringing optimism rather than tears. Despite the fact that at this moment I don't have the use of my biceps and triceps, and balance is greatly affected because of this, I have to think of all the progress that has been made. I can only hope it continues...
Laurie Jean ©1997
Read more about Laurie Jean in her Website. Thanks to Krezzi for keeping Laurie's website updated.