My mother-in-law, Alma, has been living with the autoimmune disease known as myasthenia gravis for seven years now. It is a serious and incurable condition characterized primarily by muscle weakness and fatigue. I have known her for 17 years and she is one of the most positive and happy people I have ever met. Even with this unfortunate diagnosis, her resolve is strong and her optimism unfaltering. Alma was more than happy to share her life experiences so far with myasthenia gravis.
Myasthenia gravis can be a difficult disease to diagnose, sometimes taking years before a patient can finally put a label on their health problems. What were your first myasthenia gravis symptoms and at what age did they start? After your first symptoms appeared, how long before you received an accurate diagnosis and by what type of doctor?
Alma: When I was 54 years old, I began noticing episodes of double vision mostly when I was driving home from work, which I attributed to tiredness and stress. I also had occurrences of weak neck muscles. I went to my primary care doctor who tested me for diabetes (negative results) and then to an optometrist who prescribed glasses for the double vision. The double vision continued and progressed to what seemed like I was looking through a kaleidoscope.
One day while shopping, I felt like I was inside a tunnel of colors and the aisles were crisscrossing all around me. I could not even move and felt terrified. I had no idea what was happening to me. My husband rushed me to a neuroophthalmologist who began conducting intensive testing that included two MRIs, prisms on clear glass lenses to correct continuously changing vision problems and an eye patch. Almost a year into the testing, the doctor asked if I had experienced weakness of the eyelids or droopy eyelids. I had recently experienced that symptom which I also attributed to tiredness. That turned out to be the key to his initial diagnosis of myasthenia gravis. I was referred to a neurologist who performed an electromyography (EMG) to test the electrical activity of my muscles. The results of the EMG together with all my symptoms confirmed the diagnosis that I was afflicted with the autoimmune disease called myasthenia gravis (MG).
After receiving a diagnosis, how did your life change? Myasthenia Gravis is generally considered incurable, but manageable in most cases. What treatment plan did your doctor have going forward?
Alma: My neurologist presented my diagnosis in a good news, bad news analogy. He said, “The good news is, you have one of the most treatable (not curable) autoimmune diseases. The bad news is, you have myasthenia gravis.” Amidst the bad news, while trying to keep things lighthearted, my response was, “Well, I am very picky about my diseases, I won’t have just any disease.” The truth of the matter is, we have no say about these types of diseases; essentially, they pick us for some unknown reason.
For the first couple of months following my diagnosis, my symptoms did not advance nor did I acquire additional symptoms. My doctor was optimistic that the disease would not progress so I was being treated with the minimal medication known as mestinon which was developed for myasthenia gravis. Unfortunately, our optimism was short lived. Soon after, I began having difficulty swallowing and extremely slurred speech. About four months after being diagnosed, I had what is known in the MG world as a myasthentic crisis. My breathing muscles very suddenly became weaker and weaker until I could barely breathe or talk. I was taken by ambulance to the ICU where I was placed on high doses of steroids and IVIG treatments for a week. My myasthenia gravis had progressed to the most severe form which affects muscles in the chest that control breathing. That was the beginning of what is now six years of steroids, immunosuppressants, Intravenous immunoglobulin (IVIG) antibody transfusions every two weeks, a six-bout regimen of chemotherapy and other medications and necessary supplements.
I have had to make many lifestyle adjustments. Anyone and everyone who knows me can testify that talking and laughing are a huge part of me. I love being outdoors. I love exercising, singing and dancing. All of these activities have had to be revamped according to my strength. I loved my job, but it became very difficult to continue therefore I sadly resigned.
The adjustments have also given me so many good things in return. I have more time to spend with my family who has been absolutely wonderful, understanding and supportive since the day I was diagnosed with this autoimmune disease. My grandchildren are the light of my life and I enjoy every moment with them.
Unfortunately, all the prescription medications you were on created other serious health issues in addition to your autoimmune disease. What side effects did you experience and how have you tried to manage them?
Alma: I developed what is known as steroid-induced diabetes type B. This diagnosis frightened me as well. I now had two chronic diseases to deal with. However, I’m a very determined woman. I decided I would tackle diabetes by losing weight. I lost 60 pounds in about eight months-all done by diet since exercise is very limited with myasthenia gravis. The weight loss also helped control my high cholesterol and other ailments. My diet, and a decrease in prednisone, has nearly eliminated the diabetes. Steroid use has also decreased my bone density. I take large doses of calcium and Vitamin D, however, this remains a problem that I can’t do much about.
The immunosuppressant drugs I take make me extremely susceptible to infection, illness, and certain types of cancer including skin cancer. Hand sanitizers are essential to me. I use them all the time in addition to constantly washing my hands. When traveling by air, I wear a mask. I do not care about the stares or the questions. I just can’t afford to catch something that is, for me, potentially very serious. Of course, many circumstances involve a lot of people shaking hands, hugging, etc. Things usually work out for the best. As for skin cancer prevention, I wear a high SPF count sunblock and wear long-sleeved shirts and big floppy hats. The IVIG treatments also help in prevention.
I also cannot have live vaccines nor should I be in the presence of someone who has for about two weeks. Of course, all of these potential dangers cannot be avoided all of the time. But when I am aware of them, I take the necessary precautions.
Because I have generalized myasthenia gravis, exercise of any kind including walking, can trigger breathing and swallowing problems. When a significant amount of walking is involved in any activity or outing, I sometimes use a wheelchair.
In your mind, what is the biggest misconception by the general public, as well as family, about Myasthenia Gravis?
Alma: The fact that I do not typically look sick and, for the most part, that I walk without any problem mistakenly conveys a message that I am not sick. Strangers have gone so far as to question my parking in a handicap parking space (one man sat in his car waiting to see if I actually had a medical problem when I got out of my car). Family and friends know the entirety of my disease and its limitations and even they at times will forget. As a matter of fact, I sometimes forget myself until my symptoms creep up and remind me.
Although you haven’t experienced complete remission and continue to experience flare-ups, you are in a much better place these days. What advice do you have to give to other newly diagnosed myasthenia gravis patients?
Alma: Educate yourself on myasthenia gravis via internet, brochures, etc. Try to be patient while doctors are searching for the right treatment for you. Oftentimes, it can be a long, tedious process of trial and failure. It’s especially exhausting because obviously you are sick and want answers. A treatment will be found that works for you. You will be a huge part of the treatment process by knowing what makes you feel better.
I still have to remember to take my own advice and not be so paranoid about germs and contagious conditions. Be cautious but not paranoid. Be realistic but optimistic. And always remember there is a treatment that can help each of us while research for a cure continues.
