Finally Got My Appointment And Diagnosis Coming Soon. Question About Desmopressin.....

[Miqual]

After 17 months into the second "outburst" of what was deemed a medical mystery and possible "hyperdynamic autonomic nervous disorder" 20 years ago, I finally got into the Dysautonomia Dr. network after some initial appointment rejections, and had my appointment with Dr. Jaradeh at Stanford yesterday! My GP had basically given up last April and I basically self-diagnosed and drove her until she got me this appointment after discovering the board here as well as other Dysautonomia support information online. Have posted a few times and exchanged messages with some of you and it really helped in getting on some lifestyle and self-treatment directions that created some quality of life improvemnts until I got to this point, so I definitely owe you all a thanks for existing here!

Dr Jaradeh believes I may actually be the 5-10% who have a Pheo tumor that don't show up on abdominal CT scans ( I had seen a Pheo specialist due to me testing super high on adrenal hormones in 24 hr urine tests both as a child and now, but he cleared me due to a negative CT) and he has ordered a more advanced body scan (can't remember name) as one option, but he's also testing for a variant of Porphyria also and doing the 24 hour urine test for that tomorrow. And he's also scheduled me to come back to to do the full autonomic nervous system testing routine that Stanford does too.

Question for now though, have any of you been put on Desmporessin tablets/spray to reduce fluid needs/excessive urination? He put me on that to start until I have my full range of testing done and wondering if anyone had any insight on

[Angela]

i have never heard of that, why does he want to eliminate your output of urine? I was tested for pheo 2x via 24 hr urine and was only told not to eat certain foods, avacado being one i don't know why? when I got my cortisol blood test I think my ep told me to fast, including h20 but when i finally went in to get the test I had drank water and coffee (shoot, I had to take my pills, aye?!) and my results showed nothing, according to my neuro. i had already in my mind fired my ep at that point and never followed up with him, just asked that the results get faxed to neuro.

[ramakentesh]

THis may be of interest.

http://www.heartrhythmjournal.com/article/S1547-5271(12)00529-2/abstract

Desmopressin in the postural tachycardia syndrome

2 episodes only in 20 years? Wow your lucky - what's your secret (if it turns out to be POTS)?

[Miqual]

Actually 2 MAJOR outbreaks in 20 years. I've been battling symptoms the whole time in between, a lot of them quite difficult. After basically having my late teen years taken away from me due to this and they told me back then there was nothing they could do for me besides the blanket "hyperdynamic autonomic nervous disorder" diagnosis, as things settled into being more livable, I basically ran from everything and just dealt with them rather then using Dr's. My GP's I moved amongst as I was an adult and moved out of my parents house during that time had no clue, and to my own fault, I didn't tell them as I was trying to almost deny they were related to the childhood stuff and my "worst nightmare" of it coming back happening. It's why I was in and out of hospitals and Dr's for things such as exertion migraines, atypical chest pain, arthritis, anxiety and other things but there was no one to put all the peices together into one whole part. It wasn't until spring of 2011 when I went under anesthesia for artho knee surgery to clean up bone fragments, shortly followed by anesthetic for root canal surgery that this latest severe outburst happened.

RIght now the Dr thinks the Dysautonomia/ hyper-POTS symptoms are not the problem in itself, but symptoms themselves of another issue. Thats why for now he's ordered the MIGB scan to see if the Pheo Dr. missed a Pheo tumor due to it not being on the adrenal gland itself, checking to see if I have Porphyria, and also looking into Auto-immune origins of these problems.

[ramakentesh]

Hope it all works out mate.