The first result listed is the dilemma of being misdiagnosed. This is dear to my heart as it took about 30 years for me to be diagnosed. And I hear over and over the same story with different signs and symptoms. One diagnosis that I hear too many times is brain tumors. How horrible would that be? Diagnosis testing is getting better but our brains are still a mystery to everyone except the One who designed them!
The second statistic has to do with MS symptoms. It goes on to talk about pain, treatment, impact on daily life, and the complexity of the disease. It is good information.
Every week there is a question in their newsletter that I answer as well. It’s very interesting and thought-provoking to see the answers. The question this week is “Does MS affect your mental health?” I answered yes.
Another survey that I participate in is called IConquerMS. This initiative enables the collection of large amounts of information which is used for answering key questions about MS. It is driven by individuals with MS and informed by those with MS who share input and ideas. This is the first example of a large scale approach to research. The survey asks the following questions–demographics, history, overall health, quality-of-life, other conditions, and physical activity. They ask that participants complete the survey every summer and every winter. I haven’t seen any results yet but they also have a newsletter.