2 days in ER

[ariella]

Hi

Just back from the ER. Was there for 2 days. Didn't go for POTS-related symptoms (at least I don't think so), doing workup for something neuromuscular or maybe mitochodrial disorders. Was having a relatively good day on Tuesday, but of course overdid and carried my crying 3 year old about 100 feet. About 2 minutes after putting her down, was extremely weak and felt like I was suffocating. It wasn't going away. Someone went to get my husband who brought me home in the wheechair, and I thought I would just be able to rest it off. Next morning was no better, GP sent me to the ER.

I'll spare you the details, it's more relevant to a different forum, but the one good thing that came out of it is that the admitting nurse had worked for years as a nurse in a dysautonomia clinic (FD), and knew all about my POTS symptoms (which by then i was experiencing as well) That is so unusual. She took interest and referred me to a doctor in my area who she thinks could help me out. Additionally, I've learned that if I tell them POTS or autonomic dysfunction, they don't know what that means in the local vernacular. I finally hit on saying that I have dysautonomia, and suddenly everyone was interested and sympathetic!!!...they probably have some experience with familial dysautonomia (I live in Israel and FD affects mainly European Jews) What a twist! Found the magic word!

ER visit was otherwise very unproductive, they kept me overnight for observation and was sent home feeling no better than when I was admitted. They won't try to do anything for the other condition until I complete some more tests, but the catch 22 is that they won't perform those tests when I am feeling so sick. Very frustrating.

Ariella

[MightyMouse]

Shazam! That's pretty cool that you were blessed with a knowledgeable staff in the ER, and doubly good that you got solid treatment to boot.

[Roselover]

Oh Ariella,

I'm so sorry you ended up in the ER! Sounds like this has postponed the other testing that might have given you more info about your condition. How frustrating. but I trust you will be able to get those tests done in the right timing.

So glad you found a way to communicate and that they showed such an interest in you. That's great. Please keep us updated on how you are.

Love Roselover

[ariella]

yup, was supposed to do a specialized emg on wednesday. They told me not to come in until my shortness of breath is resolved. And without the emg, they won't try something to help me for the muscle weakness. Still cannot walk very much. Nor breathe. I told them that if they want to discharge me they will have to wheel me out and handle the paperwork themselves. Friends pitching in and caring for my family, sending over meals...

[Guest Julia59]

Wow, I'm so happy to hear the ER expereince was not a total disaster like I hear so many times form others on this forum.

You actually had someone who knew what dysautonomia was. I am happy for you that she referred you to a physician who may be able to help you feel better.

I hope you can feel more stable to get those tests done that you need.

Keep your chin up----blessings to you-------------

Julie :0)

[ariella]

yeah, it wasn't a total disaster, but I was not admitted for POTS symptoms, and they did absolutely nothing to resolve what I was sent there for. Nor did they do the appropriate testing. And they were supposed to be evaluating something potentially life threatening. GP was reluctant to send me, he knew I would get a run-around, but was breathing very poorly. My point is that not only us POTSies have a hard time in the ER!

[DancingLight]

oh poop! that is very frustrating...and what a catch 22, you are right, with not being able to get test while you are feeling so lousy, but needing the tests to get some answers! i try to trust in timing...but it is soooo hard! let us know, of course, what you find out and i hope that you are able to get the testing done soon...

emily

[Sunfish]

ariella -

sorry that you had a frustrating time in the ER but glad to hear you found the "catch phrase" as far as the autonomic issues go. i hope things start to move in the right direction so that you're able to go ahead with the other testing you need.

hang in there,

:-)melissa