A Neurology Visit for My Sister

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 I heard from two reliable sources that MDR’s MRI machines are rather outdated and the magnet’s power is a lot less than the machines at Crouse or Upstate (which has the strongest and gives the most detailed picture).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.

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4 thoughts on “A Neurology Visit for My Sister

  1. I just read your article in the M.S. cronicle and am relieved to hear that it is not my imagination that alot of neurologists do not know how to treat M.S. I have had MS for 12 years and have lost the use of my left side . I guess I don’t know why they won’t listen. Thanks so much for your article I know now I need to be more forceful and in charge of my own care.
    Leslie

    • So sorry to hear that MS has affected your left side. Our disease is such a robber!
      glad you have taken charge of your own care; don’t forget to have an advocate accompany you to the doctor’s if you feel unsure about being able to express your viewpoint. Some days we are just not as ‘in charge’ as others, right? Communication is key.
      Blessings for your ongoing fight!

  2. I always enjoy reading your article in the MS Chronicle. Today I read your most recent posting about going with your sister to the neurologist. Even though the article made me so very angry, I still enjoyed it. I think the Dr. failed Compassion 101 while doing his studies as well as he does not seem to care. SHAME ON HIM! Hang in there “Sis.” After you adjust to the new storms that are going through your mind now, calm will return. It was so fortunate that your sister was there to help you on your first visit. I live 70 mi. north of Syr and travel to Syr for my neuro appts., and to me it is well worth the drive. Best of luck to you both. Martha

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