By JAMES LITTLE
Los Alamos
I am enclosing an informational note concerning myasthenia gravis.
There are several Los Alamos and surrounding area residents who have this disease. It is my hope that this information may help an undiagnosed reader who is suffering the disease or someone who knows a person who is suffering the disease to contact me. I want to help them. No one needs to suffer this disease without community support.
June is Myasthenia Gravis awareness month.
When I was diagnosed with Myasthenia Gravis, or MG, 2 1/2 years ago, I had never heard of the disease. That’s not surprising as only 1 in 5,000 people have been diagnosed with MG in the United States. Yet, awareness is so important. Navigating a disease that few people understand brings unique challenges.
Many physicians do not recognize MG as they have never encountered a patient with it. In my case, I thought I was having a severe asthma attack when I went to the ER. Speech and swallowing difficulty developed within hours. Thus, I was diagnosed as a stroke patient even though the MRI did not confirm it. I was then sent for rehab to a speech therapist who then sent me to a different ER where an MG diagnosis was made.
Myasthenia Gravis is an autoimmune disease. When the autoimmune system is working properly it attacks foreign cells like viruses and bacteria in the body. For people with MG things get weird. When the brain wants to use muscles, it sends messages through the nerves, but nerve cells don’t connect directly to muscles. There is a little space called the neuromuscular junction. A chemical called acetylcholine guides the message across the gap.
In people with MG, the immune system starts attacking these junctions like soldiers blowing up a “bridge”. This affects strength and muscle control in a variety of ways. But the body repairs “bridges” pretty quickly, so those with MG don’t lose their muscles permanently. Muscle strength and control comes and goes. Symptoms tend to get worse when the immune system is stirred up due to illness, stress or fatigue.
MG is often referred to as a snowflake disease because the results of these attacks vary greatly from person to person. I have experienced difficulty with hand strength and coordination, double vision, drooping eyes, loss of facial control, large muscle weakness, exhaustion, swallowing, speaking and breathing. YET I am one of the lucky ones. For me, daily medications mostly control the disease.
Others with MG travel a very different road. Many continue to have trouble speaking, chewing or swallowing. Most people with MG experience fatigue; having the body constantly attacking itself is exhausting, but this fatigue comes in varying degrees. There is no cure for MG. For some, treatments support a life with few restrictions, for others the disease is an ongoing battle that impacts careers, family life, hobbies and relationships.
I volunteer with the Myasthenia Gravis Foundation of America’s Support Group program I am happy to share my MG experiences and I can be contacted as follows: James Little at 505.393.5428 or northern.nm.group@gmail.com The best source for information is the Myasthenia Foundation of America website, myasthenia.org. There you can learn the basics, find resources, read patient stories, and explore what’s happening in research.
