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Looking For Dysautonomia Doctor In Oregon


Fall-Di

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I am looking for a doctor in Oregon. I am willing to go to Mayo Clinic, but was hoping to find one closer. We have one dr that treats POTS, but I don't have POTS. I have severe Orthostatic Hypotension, nearly fainted in cardio office. Cardio gave me lots of meds to try, none worked.

I can't find anywhere to get a Tilt table Test.

Any suggestions?

Thank you so much,

Fall-Di

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Katybug,

Thank you for the reply. I am on a waiting list to become a patient with the one and only Dysautonomia dr on the list in my area, she specializes in POTS and I strongly suspect I am dealing with Pure Autonomic Failure. I have Systemic Sjogren's and Crohn's and my immune system is on the attack, so I believe it to be an autoimmune attack on the ganglia. But, even though I have stayed at a Holiday Inn, I am not a doctor (hoping someone gets that joke).

My Lab is raising two Manx kittens at the moment. He lost his ear biting buddy last year to kitty Crohn's. :(

Hoping there might be an Oregonian in the group. Thank you!

Di

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I am from Oregon got my diagnoses at the Oregon health science university. OHSU In Portland they do the tilt table test there.

Glad to hear from someone from my area. Wish you well

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I'm in montana. I travel tonportland to see dr arden. Heading there in April

I am on Dr Arden's waiting list. Is she good? Do you have POTS and/or other autonomic issues? I love Montana. I worked in Yellowstone one summer - During the big fires - I did not start them- and just fell in love with Montana. Oh, the sky!

I am from Oregon got my diagnoses at the Oregon health science university. OHSU In Portland they do the tilt table test there.

Glad to hear from someone from my area. Wish you well

Such good news! Although I am sorry you have to deal with this stuff. Who did you see? Did they confirm Autonomic problems and could they tell you all that was not working right? You just made my night. Mayo Clinic doesn't have any appts open at the moment, and financially it was really a stretch. Wish you well too!

Thank you!

Di

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I was dx with pots fall 2013. Saw her last summer. Good visit. It was nice to have someone who sees and treats pots patients. Still looking for cause of my dysautonomia. My symptoms were better in portland...maybe elevation? We will see in April when I return if there's anything to that. I was in the wait list for 3 months or so

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Hi again sorry I've been distracted or a while. I saw Dr. Julie Khoury at OHSU Last summer. Had Autonomic testing and the results were consistent with autonomic neuropathy. But that's about all I got out of it. She was a very good doctor but could not offer me much in the way of treatment because I am resistant to taking prescription drugs because I am certain that's what led me down this road. My old doctor ( now fired ) was prescribing me drugs In higher amounts than recommended, that are known to cause POTS in a small percentage of people. Dr. Khoury thinks that is possible due to the lack of anything else being found in the rest of my test. And my new PCP is Quit certain of it.

Putting all that aside there are only a few things they can test for. My understanding is, after reading every thing I could find on this condition there are a lot of different nerves that can be affected so symptoms vary widely from person to person. They don't have test for most of them. You just need to find a Doc that will listen to you and take you at your word that what your telling them is real and not imagined. That's the run around I got for over a year. Your anxious, Your depressed , Its all in your imagination. That's when I started doing my own research. I researched for months but couldn't' find any disease that fit until I got the flu with a high fever and realized I was not sweating anymore. Since I also Have peripheral neuropathy I ran a search on can neuropathy make you not sweat. And there it was Autonomic neuropathy, almost everything had been experiencing. Well that's my story I hope yours turns out to be a much better one. Good luck

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  • 7 months later...
  • 10 months later...

Just in case anyone needs some Oregon drs. I found some goods ones! 

Primary Care - Dr. Lara Knudsen

She's a rock star in the POTs field, has several patients with POTs, 1 with MCAS, EDS and Chiari Malformation. She works with Mayo Clinic for follow up post care and goes the extra mile to learn EVERYTHING she can about the above disorders. She is in South Salem Oregon. She has me on Adderall and I am a lot better - I have the hyper POTs version. Helped me get saline Iv's when I need them too. 

Dr. Arden - Cardio in La Grande OR

She has POTs herself, her nurse practitioner that performs the tilt table test has POTs. She has a good understanding of Ehlers Danlos and MCAS. I feel she is as good if not better at treating POTs than Mayo. She did her residency at Mayo I believe, but don't quote me. Super rock star. 

Dr. Grunkmeier - Gastro - Portland

Pretty familiar with autonomic issues, he's an IBD specialist who really knows his stuff. I got a diagnosis of autonomic immune problems, good treatment that finally works for me. Easy on the eyes too. ?

Hope this shortens the time it takes to get good care on the West Coast. I have learned a lot in a year. The biggest lesson... If you aren't being heard MOVE ON and don't carry their failure with you. 

Peace out Potsies

 

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