May 13, 2021 © by Judith Allen Shone
“How beautiful a day can be when kindness touches it.”George Elliston
I thought I was a healthy twelve-year-old. But between 1954 and 1961, from the beginning of the seventh grade, until the spring of my freshman year in university when I turned nineteen, I visited eight different doctors in five different states that led to a diagnosis that would forever change my life and my future.
An unexpected beginning
It began in grade seven. That day I came home and reported I had fallen during a race and couldn’t get up. The teachers had not noticed what happened because I was running at the far end of the playground. The only thing I could tell them was that all of a sudden, I collapsed. My legs stopped working, they wouldn’t respond to my wanting-to-run anymore. I dropped. I had lost power or, as I now know, had lost strength.
I only knew that I seemed to disconnect from my legs. Without warning, I had dropped to the ground and couldn’t get back up. I recall teachers rushing to see what was wrong. I always had been able to pick myself up from a stumble and go on. I couldn’t this time…instinctively I knew this time was not a stumble. But that’s all I knew.
I must have rested and regained my strength because later that day, I walked home. And when I got home, there was nothing to show my parents. I only had words to talk about what had happened. Although my parents listened, they did not seem overly concerned. They explained that I probably was experiencing the side effects of my body growing into an adult. Because nothing else happened right then, I expected they knew best. It did not seem important, and, after all, there was no evidence that anything happened.
Nothing so dramatic happened for some time. But I noticed I was finding it increasingly difficult to take long walks. At times, I would have to walk beside my bike rather than ride it. I said it was my legs that kept feeling weak and made it awkward to walk or ride. Me, the little girl who used to run all over the four-acre hillside where we lived in the country, I had little strength left in my legs. Me, the child who loved to skip rope and ride my bike on the neighborhood streets when we moved to town, I began feeling insecure pedaling down the block, afraid I’d fall and couldn’t get back up or not have the strength to pedal back home. From then on, in fact until this day, I have had trouble walking, even for short periods, without rest, without feeling awkwardness, exhaustion and pain.
“There is no pain”
A couple of years ago, in a casual discussion of pain, a doctor was questioning if I really had MG. I heard, “…because pain is not associated with MG.” I could not believe my ears!
Instantly, I felt I had to explain that definitely I have had, and still have, pain. Maybe, not a stinging, knife-cutting pain, but pain that hurts. It is often painfully challenging to walk, to put one foot in front of the other because my muscles hurt as they are trying to respond to my wishes. But, as is the progression, the spectrum of the disease, I rest and then can go a little farther.
(Note: Me thinking: I wonder: if the muscles in fatigue are not ‘supposed to pain,’ then is the pain, which we feel, coming from other muscles that are having to take up the slack for activity our weakened muscles can no longer execute for us? I do not know, but I agree with many, there is a feeling of pain associated with the weakness.)
It was during those early years, after reporting”weak knees” or “pain in my legs” many times, that my parents first took me to see a doctor. Probably our family doctor. Yes, I was at an age when growth spurts began, and I had grown taller. The first doctor noticed that, too, and told my parents that I was having “growing pains” and would get over it soon enough. That was it— we went home. But I didn’t get over it. Yet because the doctor had told my mother it was “only growing pains,” and because she, too, had thought that in the beginning, it took some time for her to accept, even when I kept saying it, that I still had abnormal muscle pain walking or riding my bike.
I was beginning to realize how difficult it was to talk about ‘pain,’ a feeling we cannot see. I kept trying to put my sensations into words so I could tell my parents and the doctors. That’s when I learned I knew my body best, that doctors really did not seem to understand…and just maybe that was because it was difficult to explain to them.
“Swollen or inflamed knees”
I kept searching for the right words to explain what I felt was going on, but early on, my complaint seemed to focus on my knees because they ‘gave out’ quite a bit.
During that period, my mother took me to a doctor, who decided it must be inflammation around my knees. That doctor gave me cortisone shots, mentioning “swollen knees.” Those shots introduced me to long needles but did not relieve my complaint, nor my loss of muscle strength, nor get me closer to a diagnosis.
“Water tires everyone”
I began swimming with the YWCA synchronized swim team. I could do the ‘in water’ routines, but when the arms and legs had to extend out of the water, it was sometimes impossible to do the scheduled figures, movements of arms and legs. Yet, since my inabilities were not consistent, they allowed me to stay. Bless the Y! But I always noted how exhausted I felt after being in the water. I could not always pull myself up the ladder to get out of the pool. When I explained this to the doctor, who, earlier, had been the one to tell my parents I had growing pains, he smiled and told me, as if I were just too sensitive, ” Everyone gets tired swimming. Synchronized swimming is complex gymnastics; it is hard.” He never understood.
“Just wants attention”
It was about this time that my baby brother was born, and we were now four siblings spread over sixteen years. I loved walking the baby in his stroller but I still found I couldn’t keep up my strength when walking very far. I still felt pain when pushing to persevere. My mother took me to a new doctor. With the history from the two earlier doctor visits, and with the birth of my new brother, this new doctor decided I was normal…just a teenager acting out to get attention.
“It’s all in her head”
By the time I was beginning my first year of university, I went alone to an appointment with one doctor who could not contribute to my diagnosis. By then, I had lived with the experiences and had visited enough doctors to recognize that (it seemed) most doctors had no idea what was going on. By then, I knew very well how it hurt to walk, how I could not dance for more than a few minutes, and climbing stairs took concentrated effort, one step at a time, pulling myself up with my arms.
When I discussed these ‘absolutes,’ when I practically roared all the false conclusions of other doctors, this doctor responded, “Then I think it is probably just in your head now. You have an image of yourself with pain and so you have pain.”
I was floored. I could not believe all doctors were coming, more or less, to the same conclusion. But I knew none of them were right. When I reported this doctor’s conclusion to my parents, who by then were convinced something was abnormal in my body, even they did not know what to suggest next.
Throughout those years, even though doctors did not seem to believe me, very real muscle weakness increased to include more than my legs. In college, my eyes began to droop (think Aristotle Onassis), often my eyes had ‘double vision’ and I had great difficulty reading…so much that I changed my area of study to art instead of journalism. My breathing became labored during the day, especially when I walked. I couldn’t hold my arms up to curl or brush my hair without rest. I balanced myself by using an umbrella instead of a cane…I was a college freshman, after all.
In over six years, I saw eight doctors in five states before we found someone who had the knowledge, the time, the understanding and patience, plus a keen interest to listen and discover the what was going on.
In university I joined a sorority. For me, it was a group of girls spending time together to enhance social activity during college years. One of the girls, who happened to live in town, overheard me explaining my muscle weakness to another girl. She suggested I see her father, the head of the neurology department in the medical school.
“He’s a diagnostician,” she said. She was sure he could help me. The stars had finally aligned for me. …we need more diagnosticians!
Indeed, meeting with her father ended the long line of obstacle myths that seemed to prevent doctors from being able to think ‘what else might it be?”
This amazing doctor held classes in neurology at the university. He was a professor and department head, an interested researcher, plus a physician. I’m not sure which hat he wore when he spent a full day for consultation with me, but it made the difference. I guess not all doctors with a revenue-centered practice can afford to do that. (Watch my naïve idea of doctors fizzle!)
The next day the doctor took an unanesthetized muscle biopsy, did physical testing and concluded with a Tensilon test injection to confirm his inclinations to make a clinical diagnosis of myasthenia gravis.
As I lifted a leg off the table, something I could not do prior to the injection, I sobbed. Tears soaked my face. I knew this doctor had finally found what had made my muscles weak for years.
Even though I had a thymectomy in 1961, and experienced some remission, I feel it has not been 100%, I never dreamed my muscles would remain weak for the rest of my life.
In the 1960s, scientists were beginning to study that rare disease called myasthenia gravis. No wonder little was known during the years when my family began looking for answers. It is forgivable that doctors were not aware of MG back then. But I never thought I would still hear similar stories of doctors not recognizing MG coming from younger patients sixty years after my diagnosis.
Following diagnosis, and while I was still in university, my Doctor/Professor asked me to join him, without medication, on stage, during the neurology lectures when he covered myasthenia gravis. He assured me, because of the rarity of MG, I might be the only person with myasthenia many of those students would ever see, including in their practice.
As a peer of the students, I had conflicted feelings about that. Eventually, knowing how long it had taken me to discover a doctor who recognized MG, I accepted that I had to help this man who helped me. I became his lab frog, his guinea pig.
Generations of doctors have gone through medical school, and taken neurology classes, yet I now wonder how many were fortunate to have student examples of MG in their class.
Myasthenia is classified as a ‘rare disease.’ So, it might not be top of mind when doctors see a patient, even today. Reading the comments on myasthenia websites and social media groups breaks my heart. From the patient perspective, the needle on recognition and awareness has moved very little. Patients are reporting the same old myths being given to them as answers when they are seeking help. A myasthenia gravis diagnosis is apparently still too long in coming for some.
Joining the campaign for awareness!
But my history has prompted my current quest to do what I can to highlight MG. Yes, it is a complex disease, even with other diseases that mimic it. And yes, diagnosis rarely comes in one appointment. But there are tests today that were not available in my day. I just hope our campaign for awareness helps make MG a priority for more research. We need to think of myasthenia gravis more than just in June!
My new journey is focused on getting the word out, toward letting as many people as possible know about myasthenia gravis, so if doctors don’t think of it, perhaps a family member, or a friend or neighbor might suggest it as something to talk about to a doctor .
Now, when we hear of someone with weakness as a symptom of something unknown, we know to ask if they have investigated myasthenia gravis.
Read pieces from my story from My Lifetime with Myasthenia Gravis by Judith Allen Shone
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Confusion I experienced © 2021 Judith Allen Shone