Those who know me know I have a disease. It is called Multiple Sclerosis (ms). MS is a disease of the central nervous system. It is never contagious, you can not catch it from anyone. This is a disease that may be different for each person. Thus, it truly is “my own disease”.
MS does different things to different people. It is one of those diseases that is very difficult to diagnose, since it can mimic many known diseases. One of the best sources for information about ms is The National Multiple Sclerosis Society, and its counterparts around the world.
I was diagnosed with ms in 2000. It was the millennium, and a few days before the 4th of July, I woke up at midnight with a severe headache. I had a whistle in my head, I was dizzy, everything in the room was spinning in different directions (that’s called vertigo), my stomach wanted to vomit, I could not stand up. I lived alone in an apartment. I struggled with these symptoms until 6 am, when I drove myself in a crooked line to the emergency room. I was dying!
We all have challenges. The worst symptoms I have that are visible are weak muscles. I have spent years building my muscles up again. I have had 18 months without the use of the right arm. I have had months of numbness in the left hand. I have walked like a drunk for weeks at a time. I can no longer ride a bicycle. I have advanced from walking, to walking with a walker, to walking with a cane, to walking without assistive devices today. How long my disease will allow that no one knows. I could be in a wheelchair tomorrow. Those with my disease go to bed at night, not knowing if they will be able to get out of bed in the morning. Some days, my speech is slurred so bad no one can understand me. Some days, my vision fails.
I know everyone knows someone that has or has had ms. I know you all want to help. Sometimes, the best help is telling someone with ms to call another person. We each experience different things with this disease. I call it “my own disease” because my symptoms are not any other persons symptoms. I can not always relate to someone else with ms because they have symptoms I do not have. However, talking to others with ms allows me to know I am not alone with my own disease. Others have their own disease, and can understand the pain, frustration, and battles. When my own disease was diagnosed, there were under 350,000 people diagnosed in the United States. Today, thanks to the advances in MRI technology, there are thousands more.
Please do not give a bunch of references for cures for my own disease. I have found that while there are many things tried, the best reference there is for valid information if The National MS Society. If you tell me your friend knows of a friend that knows someone that had ms and tried ??? and it cured them, I will check that website. MS symptoms come and go. They are different for each of us with my disease. Some people will have severe symptoms for years. Some people will have severe symptoms for days. We are all different. What works for one may or may not work for anyone else with my disease.
I can tell you one fact about my own disease. It is the most frustrating challenge I have had in 60 years. It is also the reason I walk today. Yes, I am frustrated much of the time. Yes, I am extremely grateful that all I have is multiple sclerosis. Remind me to expand on that later.
Links to information:
What Is MS?