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admin · Site Admin Joined: 24 Oct 2007 Posts: 4

It takes a different amount of time for everyone to be diagnosed so how long long did it take you to be diagnosed? What kind of doctor did you see and what type of test finally determined that yes, you do have dysautonomia and which form do you have?

I am hoping that this post will give others hope and let them know what type of doctor to go to and what tests might need to be ran.

Sarah Wink

sarah smile · Joined: 25 Oct 2007 Posts: 33 Location: Greenwood, SC

My first fainting spell was on August 2, 2004 and yes, it was a rough road to being diagnosed! I also went through the period of doctors telling me that it was all in my head. I still do actually, even though I have been diagnosed. Not all doctors treat me that way, but a few still do. Shocked

I was diagnosed with NCS in April of 2005 at the National Naval Medical Center in Bethesda, MD by a Tilt Table Test in the Cardiology department.

Later, my fainting got worse so I was sent back to NNMC and was given a stress test as well. With a new team of doctors, I was diagnosed with POTS. I thank all of them very much!!! I really wish I could find all of the previous doctors that I had been to so I can tell them what I was finally diagnosed with, so maybe in the future if they have another patient like me, they will know how to diagnose them in a more timely fashion. Wink

sarah smile Very Happy

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POTS, NCS, IBS, GERD, hiatal hernia, erosion of esophagus, inflammation of the intestines, possible GP, anemia, hypovolemia, refractive error hypermetropia, multiple sleep disorders, bladder dysfunction, and others...

Nicole · Joined: 25 Oct 2007 Posts: 19 Location: Gulfport, MS

My first episodes started in high school, but they weren't nothing I couldn't handle. It started being bad on me starting in 1998.

I went through many doctors and many tests for years. Finally I did the research myself and found the proper doctor and diagnosis in June 2007.
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*Nicole*
POTS, SVT,atrial tachycardia, chronic fatigue, insomnia, NCS, low potassium, lower esophageal rings, IBS, gastroparesis, insomnia, fibromyalgia, and others

Have a blessed and wonderful day!!!! HUGS and LOVE

sleepingbeauty · Joined: 26 Oct 2007 Posts: 8 Location: Pennsyvania

hello!

I have had pots my entire life.. first time i remember i was approx 7yrs old.... when i was about 12 urs old symptoms of pots got much worse for me.. and i kind of learned to live the way i was living for about 7-8 yrs...

I saw many many dr's.. many different types of drs as well...In march 28th I woke up with a sever headache and i was so dizzy that i couldtn sit up.. and had sever tachycardia.....I finally got diagnosed with pots when i was 20 yrs old.. by an EP cardiologist.... Rolling Eyes

I have many diagnosed with many other things since then.....

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Sleeping Beauty 25
pots-chiari malformation-sleep paralysis-to name a few disorders.....

"I'm getting really good at making Lemonade!!!"

whitneypaige · Posted: Mon Dec 10, 2007 3:13 am Post subject:

I've had, what I am just now realizing were, symptoms all through my life and they were really worsening in high school but I didn't think anything of it. I would have palpitations and not be able to see/hear, and I'd feel like I was going to faint. I would tingle in my feet/hands. But I just didn't think anything of it so I'd go sit down and put my head in between my legs and it would go away.

After I graduated high school in 2005, I was working at a Veterinary Hospital. In October, 2006...that's when things got too heavy. I started passing out, having non-epileptic seizures, major panic attacks at first which led to the seizures, and all of the dysautonomia and mvp symptoms just hit me at once and I couldn't control any of it.

Eventually I had to quit my job there. I thought maybe it was some weird kind of reaction to something there. I went three months having everything tested from my head to my toes, literally. Nobody found anything wrong! They said it was all in my head, etc. They even gave me an anti-psychotic shot @ the ER in my hometown which put me into a coma.

Finally, my dad's boss got me in touch with a award winning cardiologist. He looked @ my records and diagnosed me before I even got there with Dysautonomia and MVP. He saw my past ultrasounds and EKGs of my heart and said I had SVT and MVP with regurgitation. But he did his own tests anyway. I actually didn't take the tilt table test until like a month or two after he had diagnosed me! Other doctors were doubting him and it was getting on my nerves so I did the TTT and I passed out within 6 minutes. My BP went to 90 to below 60 in 5 or 6 minutes and I was out! He said it was significantly positive for Dysautonomia.

But I went only 3 months without a correct diagnosis. I know people that went years and I just can't imagine that.

My whole story (can you believe this was the short version?!) is @ my website. Wink

Feel free to look around there if you want! It's posted here under the websites and in my profile as my website.

Love you all!

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Whitney Paige

Dysautonomia, Mitral Valve Prolapse, SVT, Fibromyalgia, Non-Epileptic Seizures, Acid Reflux Disease, Chronic Constipation, Insomnia, Sleep Paralysis, and much more!