So I have been doing a lot of reading, researching, and connecting with people with MG and have found that what my doctor initially told me about MG is not the whole story! was originally told that it generally targets women in their 30 decade and men over 60. I was also told that it is not hereditary and there is no genetic predisposition that scientists know of. Moreover, there is nothing that I have done (or not done) that could have contributed to getting this disorder. In other words I wasn’t too active or sedentary or ate to badly or anything like that. Though I am quite healthy and active and was when diagnosed as well.
However, during my research, reading, and networking, I have found a lot of this to be contradictory. I thought at first maybe I was finding the exceptions to the rule, but then I was finding these people to be more the norm. I believe that there are a great many people that are simply not diagnosed, or not put into the system (like mayoclinic). Furthermore, I believe that many people are misdiagnosed because things like muscle weakness are a vague sign of so many disorders that doctors tend to jump to other issues before thinking of this disorder. It it the silent and little known disorder. It seems more reasonable to say M.S. which is well known, anemia, cerebral palsy, meningitis, and so on. Some are short term and curable, while others are chronic, long-term, and incurable.
During my searches I learned that many people I spoke with, there were people were diagnosed at ages well below that of what the doctor and the online sources quoted me. These people were 9-18 years of age. Moreover, on a rare occasion a few had more than one person in their families with the disorder which was amazing. I have only a grandmother with M.S. which was even amazing to my neurologist. They even found it more amazing that many of the women in my family suffer from severe migraines and take serious medication for them.
They say that the disorder is a 1 in 10,000 chance of obtaining it but it seems when I am online, in treatment, or other places that more and more people have it than that. I’m not sure if there is a proper census on MG right now. Maybe the more information on it and less stigma associated with it will help people come forward and help gain accurate numbers worldwide. I speak with many people worldwide on Dailystrength.com though I am not sure if they all enter in to the mayoclinic database or not I believe they are still entered into some national database. I Hope.
But we have to do better on the consistency on the MG information and what is being told to patients. The information is so basic that we are to believe that this is what is suppose to be right even when we are the abnormal cases in that situation. LIKE ME! They will still feed you the basic information which almost makes the doctor sound like a robot as if they do not know more about the disorder. It makes you feel uncomfortable as if you should run…