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Tuckerdoodle (@tuckerdoodle)

Autonomic Dysfunction

Brain & Nervous System | Last Active: May 13, 2020 | Replies (19)

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Hi Tuckerdoodle (your username made me giggle. I’d be interested in hearing the story behind it.)
That is quite the list of conditions. I can only imagine that you have had a rough journey of appointments and few answers over the past 15 months. I hope that I can connect you with other members who can share experiences that may help your investigations.

John provides further reading in this discussion thread:
– Cardiac autonomic neuropathy aka Cardiovascular autonomic dysfunction https://connect.mayoclinic.org/discussion/cardiac-autonomic-neuropathy-aka-cardiovascular-autonomic-dysfunction/

@brie87144 describes similar symptoms and talks about autonomic dysfunction in this discussion:
– Esophagus issues https://connect.mayoclinic.org/discussion/esophagus-issues/

And while it doesn’t sound like you are a teen, I thought you might like to read through this older discussion
– Autonomic Dysfunction or POTS in teens. Help! https://connect.mayoclinic.org/discussion/autonomic-dysfunction-or-pots-in-teens-help/

Other than telling you to research autonomic dysfunction, what does your doctor suggest as the next steps?

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Replies to "Hi Tuckerdoodle (your username made me giggle. I'd be interested in hearing the story behind it.)..."

Thank you so much for responding ! And no, I am not a teenager, have a teenager though…the doctors really have no idea of what to do. Today, I fainted just walking across the back yard and it is frightening as well as annoying. My day is then spent on the sofa recovering. The Neurologist suggested either Mayo or Hopkins, I live closest to Hopkins (NJ). And it is truely an investigation and I am the lead investigator, which also is frustrating. Something with my system feels off, or unbalanced and seems to set in motion a chain reaction of events, fainting, weakness, dizziness, GI upset ect. . Since I have several doctors, Neurologist, Cardiologist, GI, I would like to find “a” doctor to oversee everything but haven’t had any luck. I was hoping there was a specific field for this, but it doesn’t look like it…thanks for the links, maybe they can shed some light. Tucker is my poodle mix that will actually sense when I am going to have a “bad” day and literally sit on top of me and stare at me. It freaks me out sometimes, lol….

Hello Tuckerdoodle, I feel for you and what you’re going through. I also have been going through all of your problems starting way back when. It got so my poor, normally very understanding, husband said “maybe you should do an internet search on hypochondria”; until I collapsed at a restaurant sitting across from him he noticed my eyeballs racing horizontally back and forth and rushed me to the ER. The ER doctor ordered a brain MRI and said I should see a neurologist ASAP. It took 6 mos. for a Doctor to say you have ataxia – get a single point can with triangular base and make it your new best friend. Two months ago, I got up out of bed at 3 am on a Sunday and went online and opened up the Mayo website and requested an appointment I heard back from them the following day, completed a medical history form; and, a week later they set me up as a client with complex medical issues. I’ll be going to Mayo in Rochester in August and pray they can help me. So yes, Tuckerdoodle, I understand your frustration and pray all goes well for you.

I wish you good luck at Mayo…totally understand the husband thing. I had several MRI’s, head, neck, back, liver ect…all neg. But thank you for responding and offering help & wisdom, very much appreciated ! Good luck & prayers for you and your husband.

I have been diagnosed neurogenic orthostatic hypotension. I am now wheelchair bound. No blood pressure when I stand so I get short of breath and pass out. I have been or medidrine and Northera. Nothing raises blood pressure. HELP