My mother-in-law, Alma, has been living with an 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 confident and happiest people I have ever met. Even with this unfortunate diagnosis, her purpose is strong and her hope constant. Alma was more than happy to share her life with myasthenia gravis.
Myasthenia gravis can be difficult to diagnose, sometimes years before the patient finally puts the label on health problems. . What were the first symptoms of myasthenia gravis and at what age did they start? After your first symptoms appeared, how long before you received an accurate diagnosis and what kind of doctor?
Alma: When I was 54 years old; I started noticing episodes of double vision especially when I was driving home from work, which I attributed to fatigue and stress. I also had issues with weak neck muscles. I went to a primary care doctor who tested me for diabetes (negative result) and then to an optometrist who prescribed glasses for double vision Double vision continued and I looked through the kaleidoscope at what I saw as progress.
One day while shopping, I felt like I was inside a tunnel of colors and crisscrossed canopies around me. I did not even move and was afraid. I did not know what would happen to me. My husband rushed me to a neuroophthalmologist, who began to conduct an intensive examination, which included two MRIs, prisms of clear glass lenses, and constantly changing them to correct visions < and lakes. About a year into the trial, the doctor asked if he had experienced eyelid weakness or droopy eyelids. I have recently experienced that symptom which I also attributed to the languor. That turned out to be the key to the first 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 along with all my symptoms confirmed the diagnosis that I have an autoimmune disease called myasthenia gravis (MG). After receiving the diagnosis, how does life change? Myasthenia gravis is generally considered incurable, but in most cases it is treatable. What treatment plan did the doctor develop?
Alma: My neurologist presented my diagnosis as a good news, bad news analogy. He said, “The good news is, you have one of the treatable (not curable) autoimmune diseases. The bad news is myasthenia gravis.” Among the bad news, while trying to keep things light-hearted, the answer was, “Well, I’m very picky about my diseases, I don’t have any disease.” The truth is that we do not say anything about these kinds of diseases; essentially, they choose us for an unknown reason.
In the first two months after my diagnosis, my symptoms didn’t improve and I didn’t get any other symptoms. My doctor was the best that the disease did not progress so I was treated with a small drug known as mestinon that was developed for myasthenia gravis. Until his life he was free. Soon I began difficulty swallowing and had extremely slurred speech. About four months after being diagnosed, I had what is known in the MG world as a myasthenic crisis. My breathing muscles suddenly became weaker and weaker until I could hardly breathe or speak. 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 has progressive to the most severe form which affects the muscles in the chest which affects the control of breathing. It started with what is now six years of steroids, immunosuppressants, intravenous transfusions of immunoglobulin (IVIG) antibodies every two weeks, a six-round regimen of chemotherapy and other necessary drugs and supplements.
I had to save a lot of money. A huge part of me is anyone and everyone who knows me talking and laughing. I love being outside. I love exercising, singing and dancing. All this was to renew my strength. I loved my job, but it was very difficult to continue: so I resigned with shame.
They also gave me so many good recommendations in return. I have more time with my absolutely wonderful, understanding and supportive family 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 of your prescription medications were created for other serious health issues besides your autoimmune disease. What side effects have you experienced and how have you tried to manage them?
Alma: I was diagnosed with steroid-induced diabetes type B. This diagnosis scared me too. I now have two chronic illnesses. However, I am a very active woman. I decided to deal with diabetes by losing weight. I lost 60 pounds in about eight months – all on a diet since my exercise is very limited with myasthenia gravis. It also weight loss helped in controlling my high cholesterol and other ailments. My diet, and the decrease in valium, almost eliminated the diabetes. Steroid use also decreased my bone density. I take large doses of calcium and vitamin D, yet this problem remains that I cannot do much.
Immunosuppressive drugs make me very vulnerable to infection, illness, and some types of skin cancer. Hand sanitizers are essential for me. I use it all the time besides washing my hands constantly. When I travel by air, I have a mask. I don’t care about the stars or the questions. I just can’t take something that’s so powerful for me. Of course, many circumstances involve a lot of hand-shaking, hugging, etc. Things usually work out very well. For skin cancer prevention, wear high SPF count sunblock and wear long-sleeved shirts and large floppy hats. IVIG treatments also help prevent it.
I also can’t live with vaccines and I won’t be in the presence of someone who has them for about two weeks. Of course, all these potential risks cannot be avoided all the time. But when I know, I take the necessary precautions.
Because I have myasthenia gravis, any kind of exercise including walking, breathing and swallowing problems I am generative. Since a significant amount of walking is involved in any activity or outing, I sometimes use a wheelchair.
What do you think is the biggest misconception in the public, as well as the family, about Myasthenia Gravis?
Alma: The fact that I usually don’t expect to be sick and usually that I walk without any problem falsely means that the news is not sick. Strangers went so far as to ask me to park in a difficult parking space (one person was sitting in his car waiting to see if I had a medical issue when I got out of the car). Family and Friends know the full limits of my disease and even they sometimes forget. In fact, sometimes I forget myself until my symptoms creep up and remind me.
Although you haven’t experienced full remission and you continue to experience complications, you are doing much better these days. What advice would you give to other newly diagnosed myasthenia gravis patients?
Alma: In myasthenia gravis, the internet, pamphlets, etc. Try to be patient while the doctors find the right treatment for you. It can often be a long and drawn out process of trial and error. It is mainly denial, which is clearly weak and requires answers. A cure will be discovered by your work. Knowing what makes you feel better will be an important part of the treatment process.
I still remember to take my advice and not be paranoid about germs and contagious conditions. Be careful, but don’t be paranoid. But it is a trigger. But always remember that there is treatment that can help each of us as we continue our search for a cure.
