When people are diagnosed with a specific condition, they might be able to read about it on the internet or from information provided by a doctor. For the most part, they might know what to expect.
They also might be able to talk to other patients with the same diagnosis to better understand what they are going through, or to gain insight into what might happen as the condition progresses.
Unfortunately, with myasthenia gravis, this isn’t the case, because every patient experiences something different. This is why we often are referred to as snowflakes: We are all unique, and no two patients experience the same issues or concerns.
When I was first diagnosed, I met an older man whose only concern was double vision in one eye. He took one Mestinon (pyridostigmine) tablet daily, which kept everything under control. Since then, I also have met patients who must be ventilated whenever they get any type of cold or flu because their lungs can’t cope with extra stress.
Another friend has drop foot and constantly scuffs the front of her shoes while tripping over anything in her path. Another woman was medically boarded because she couldn’t cope with work due to constant fatigue and countless hospitalizations.
It is difficult to process that while others around you may have the same diagnosis, no one can truly understand the battles you fight every day. With symptoms that include general body weakness, weakness in a specific area, double vision, and difficulty chewing, swallowing, and speaking, this is not a condition for the faint of heart.
Medications, surgery, and other treatments may help, but there are no guarantees. Some friends have an array of medications they must take every day, and many are hospitalized each month. Nevertheless, they still often experience a flare, which means more hospitalizations, doctors’ visits, and tears.
Others go in for treatment every couple of weeks, which helps them to maintain their strength, but is expensive.
Although as snowflakes we often feel alone, it helps to join a support group with others who understand these feelings. It helps to have people who can suggest treatments with which doctors might be unfamiliar. It helps to have people in your corner to lift you up and encourage you. This is the kind of treatment that we all need. This is our commonality.
Always choose to be kind and supportive. We all need it.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.