The other day I accompanied one of my sisters to see a neurologist; she’d been referred there after a severe vertigo attack and some other weird symptoms. Her MRI showed some “scattered lesions” and a “possible demyleinating disease”. The conclusion by the end of the visit was that there was no MS or other disease in her brain. Yay!! That included mad cow disease, which is something she frequently jokes about, but I think secretly fears. After delivering the good news and addressing another issue, the doctor moved towards the door to leave. That was when I asked him if he could make her “walk the line” so I could see how she’d do. And I added that since we were there, could he please do a neuro exam so we could “check that off the list”. I tried to be light and sort of naive in order to get him to do what HE WAS SUPPOSED TO BE DOING in the first place. He told me I wasn’t invited to come back (was he joking or not?), but he did do the exam and even asked me if he’d forgotten anything. “Why, yes!,” I said, ” I always get asked to run my heel up and down the opposite leg’s shin….”
Just imagine being a patient and going to the doctor’s and not knowing what your exam should be like, or what tests you might need or which tests might be dangerous or unnecessary. You stroll out of the office happy to have seen someone, even though your questions aren’t quite answered and you still don’t know when/if or how you’ll get your life back to whatever normal is. The question of not receiving the right care hardly enters our mind, because the doctor knows what she/he is doing and has our best interest at heart, right? I DON’T THINK SO!! My sister also had swelling in one side of her abdomen, and was seen by her primary care doctor, an urgent care provider, a dermatologist and a nurse practitioner before anyone actually touched her belly to do an exam! THIS IS NOT ACCEPTABLE!!
Another point of contention I have has to do with the MRI machines. I heard from two reliable sources that MDR’s MRI machines are rather outdated and the magnet’s power is a lot less than the machines at Crouse or Upstate (which has the strongest and gives the most detailed picture). Now that I know this info, I would recommend that each of us use the better machines. Not an open MRI which gives the ‘worst’ images of all, nor MDR at Community Hospital. I was told that all of the testing places charge [our insurance companies] the same price, so no sense in paying for a Rolls Royce and getting a Yugo!
By the way, if you have trouble being “in the tube”, you’re just going to have to snap out of it! Having this disease means you will be going through the test repeatedly; that’s the reality. If you need suggestions or someone to accompany you to a test, ask your network of MS’ers, families, or friends; I’m sure you’ll find the help you need.