Learn to be your own advocate. Keep a copy of all your medical records at home – you never know when you will need to send a copy to a treatment center. RESEARCH, RESEARCH, RESEARCH – if you don’t know how, it is time to learn.
Family members will try to help but you must become your own advocate. You may have to educate doctors and nurses about LMS (remember, many of them have never seen a LMS patient). By being your own advocate, you will help your family and friends learn about this disease and they can help advocate for you when you may be too tired or weak.
There are many benefits to keeping track of your own medical records: providing new doctors the information for proper diagnosis, providing family members with health records for future diagnosis, and portability are just a few.