Yesterday I went to my GP for my yearly physical. My GP knows me very well. She sees me far too often. It was interesting to see her try to do a mini-neurological exam in me. I have done this type of exam a lot of times and with a lot of different specialists, neurologist, neuromuscular specialist, physiatrist and so on. It’s the “squeeze my fingers, don’t let me push your arm down” thing.
My responses to everything were exactly what I expected for two reasons. Firstly, I know my own strengths and weaknesses, and secondly… well … she wasn’t doing it very well!!!
After a while I could see this look of concern on her face, and I asked her why. “I really didn’t realize that you’re as bad as you are.” I told her it was no surprise to me, and Ian said it was no surprise to him either!!! We live with it! I thought she knew too, but obviously not.
Here’s another of the issues, not just if you have MS, but if you have any chronic disease. Every health professional you see has their own snap shot of how you performed on that one day they saw you. It’s really hard for all the pieces of the puzzle to be put together.
Sometimes I feel like it’s a jigsaw. I have the picture on the lid of the box. Each doctor has about 10 pieces. About 2 overlap with another doctor. I try to describe the whole picture to them, but sometimes they don’t listen, or I can’t describe it in a way they understand, or they think the picture is something different. None of them ever really get all the pieces together in one place at one time.
Hence, it’s really important to advocate for yourself. Keep good records. If you don’t agree with what you’re hearing, tell them, and tell them why. If your doctor doesn’t listen to you, find one that does.
I’m lucky that the two key pieces in my medical team are wonderful – my neurologist and my GP – and it makes it all a lot easier.