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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Delayed orthostatic intolerance

out2lunch

out2lunch

Senior Member
Messages
204
Gingergrrl said:
@out2lunch I know this thread is a few months old but I was curious if you would still recommend Dr. Jaradeh as an autonomic specialist? I have been trying to find one (a true autonomic specialist) with no luck and he would be about a 6-7 hour drive for us but do-able although I wonder if he has a three year wait like Dr. Montoya did?!

My MCAS doc who is wonderful thinks that blood is not perfusing my lungs and heart especially when I stand (and I have been using a wheelchair since last Oct due to shortness of breath when I stand) and get some relief from Midodrine even in the absence of it raising my BP which is chronically low.

Do you think Dr. Jaradeh could assess and help me with this? Does his clinic do vascular or endothelial testing too? I had a botched up barely 15 min TTT last Sept which was useless. The traditional stuff like Florinef and IV saline did not work for me.

Sorry to ramble again but very curious to hear more on Dr. J and Stanford Autonomic Clinic.
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I had a very positive experience with Dr Jaradeh. And I do understand your concerns about previous testing. I would recommend calling the Autonomic Disorders Clinic @ Stanford and ask to speak w/ his nurse practitioner, Cynthia Feakins, about your particular issues, to see if Dr Jaradeh would be a good fit: https://stanfordhealthcare.org/medical-clinics/autonomic-disorders-program.html.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
out2lunch said:
I had a very positive experience with Dr Jaradeh. And I do understand your concerns about previous testing. I would recommend calling the Autonomic Disorders Clinic @ Stanford and ask to speak w/ his nurse practitioner, Cynthia Feakins, about your particular issues, to see if Dr Jaradeh would be a good fit: https://stanfordhealthcare.org/medical-clinics/autonomic-disorders-program.html.
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@out2lunch Thank you so much for the response and I am working on this right now and really hoping to be able to see him. Feel free to PM me if you think of any other info. Hope you are having a good day and feeling better. :star:
 
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