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Here's Something Positive!


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Hello everyone!

As difficult as the last few months have been for me in regards to the seizures, there really is always a silver lining that seems to come from all of it..

I have had to see 3 new neurologist's for my Epilepsy and Migraines, the good news is this: The hospital that my local neurologist's works at is a teaching hospital, so before the neurologist comes in, there always is a fellow that comes in prior and then stays throughout the rest of the appointment. Each neurology fellow that I've seen thus far has had pretty decent knowledge of POTS and dysautonomia. It's so refreshing that these residents coming from a neuro residency are able to diagonose and have treated a few patients locally. They're extremely curious and want to discuss the "hyper" feature and are always so willing to listen to me about how I was diagnosed and all of the other conditions it was mixed up with.

Has anyone else noticed this? It gave me a lot of hope!

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Yes. You summed it up beautifully. :-) One of my best friends is a med student and they were taught a section on pots/dysautonomia and also EDS, both of which I felt were quite extensive. (Of course all her med school friends were jealous because she knew all about it already. Lol.)

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This is positive and very encouraging. Our teaching hospitals are the key to this.

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Sarah, I had an ER Dr. ask me "what is POTS and didn't know what NMH was either. I hate going to the ER because of the ignorance with the medical professionals there. I don't think they are interested in learning about it either...it is easier to think symptoms are somatic.

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YES! I had to go to the ER last week (mostly unrelated to POTS issues) and both the nurses and the ER doc I saw knew what POTS was.

The nurse was like "I'm an ER nurse, of course I know what POTS is." I told her a few short years ago even the doctors there had no clue. I'm glad the awareness is spreading.

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Hi Sarah,

Like you, Tyler had an amazing hospital experience this last time in the hospital. Our cardiologist brought in his intern team about (6 students)with him. Most of the time it's just our cardiologist that pops in but this time it was different. Children's OU is a teaching hospital. Tyler also had the same IVIG nurse again and she has most of the other peds. POTS patients that come in for treatment. I figure this would eventually start happening at this hospital. This nurse has also been training the other nurses on the floor and educating them about POTS.

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  • 2 weeks later...

Rachel,

That's so great! You are correct, teaching hospitals are where we need to focus, and also ER's. Most doctors won't see patients as complicated as some us in their careers, so for them to get to listen and ask questions, its a huge teaching experience for them. A lot more productive then reading a excerpt from a chapter in a medical book.

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