After over 15 years of our dealing with MS, I can’t tell you how many times we’ve talked to others with MS and found them uninvolved with their disease. They go into the doctor uninformed, don’t push when they are being ignored and believe whatever they are told. One thing we have learned is that you have to be your own advocate. As I said in my opening post, we started out with a neurologist who was not an MS specialist. We changed when we realized that we knew more about the new drugs on the market than he did. The Internet was not very sophisticated then but there were still chat rooms, message board, etc. available. It helps to find out all that you can. Knowledge is important. Don’t take things at face value. Check out what you are told and ask questions. I think sometimes our doctors cringe when we see them because we ask so many questions especially about new medications or treatment that we’ve read or heard about. What’s the medication do? How specifically does it work? Why do I need to take it? Then go home, check out the answers you got and if you still have questions, use the phone or email and ask the doctor again. It’s your body, you have to be in control of what happens to it.
Make noise sometimes or better yet, be a pain in the neck when you are not getting what you want. In addition to my husband, I also helped with my father during his last years. While we were lucky enough to have him in assisted living, we always seemed to have to make noise to get him the proper treatment. With my husband, we’ve found the best doctors that we could find and still sometimes get lost in the shuffle. There’s nothing worse than talking to a machine 5 or 6 times and not getting someone to call you back. I like to say that I will become like a pimple on their butt until they answer. We understand that they have a lot of people coming through their doors and their resources are thin but hey, my husband’s a patient too and needs something. Can you overdo it? - sure - but I’d rather overdo something than not get what we need.
I hope that others will make some comments about their experiences and feelings about this.