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Comminicating Symptoms to your Doctors (and the resulting frustrations)

I had a very disturbing visit with my (old) Neurologist yesterday.
I was recently referred to a different Neuro doc because my first was SO hard to see for follow-ups and rarely even responds to my GP when she asks for updates & such. My new Neurologist ordered tests… one of which, ironically, was to be done by the old doc.
He didn’t hide the fact that he was upset with my seeing someone else, but carried on with the tests anyway (and was far from being ‘gentle’!).

Problem was, he kept asking about symptoms… what has ‘changed’ since I saw him last, but I couldn’t put into words how I felt physically. The more I tried, the worse he got.
Telling him that it felt like my legs were being ‘stabbed’ from the inside out, or that it felt like I was standing on live electrical wires (even while sitting)… or when I move my eyes I get the sensation of hearing a ‘Whooshing’ sound in my ears. All this only bought more questions like “what do you mean?”…

The more frustrated I got trying to explain the changes or new symptoms the more pushy he got, telling me I need to explain better – UGH!

After I left his office I sat in my car and literally cried for a ½ hour. I felt belittled, berated, like he was trying to say I’m making this all up!

How can I describe how I am physically feeling when I don’t honestly know how to put it into words?? My GP gets what I am trying to say, but I am also her first MS patient so she can only 'translate' so much of what I am trying to say.

Major Cog-Fog… and it doesn’t help that I’ve also had a pretty significant stroke around the same time as my MS diagnosis!

SO Frustrating!
Advice, anyone?

  1. I am with you.

    1. Earlier this week I had my semi annual ZOOM meeting with my neuro reviewing my health status, recommending a boost in B12. As our conversation was about to conclude I casually mentioned a condition thought to be a spasm event; she showed if the spasm looked like an arm flying over the shoulder as if tossing something behind me. Bingo!
      That is exactly what is happening plus several occasions being forcefully ejected from my chair. That, she said, is Myoclonus. My-o-what? Dr. Google to the rescue! I learned more than I wanted to know. It is a concern because I have a catheter in my spine if boogered I'm in trouble, and that catheter requires due care at all times. Prescription for Keppra (Levetiracetam) begins tomorrow.
      Just what I need, another MS day at the office.

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