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RhinoGut
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Hello everyone,

Let me start by first saying that I am so glad that I found this site. It is wonderful to know that others out there! My name is Ryan and I am 25 year old male "in search" of a diagnosis, however the doctors are getting "close." They believe that is does have something to do with my ANS, but they all just have that "I have no clue" looks are their faces! I am going to a specialist tomorrow and I am hoping my search will be over. *fingers crossed* I would like to share my road to diagnosis hoping that it will help others.

Lets start from the top. It began when I was watching a particularly good episode of Oprah about a women with 20 different personalities! (some very crazy stuff). I got up to get a drink of water and the next thing I know my heart was racing out of control and beating REALLY hard. I thought I was having a heart attack. I didn't call 911 cause I have had panic attacks before but this was intense. I thought I was going to die. Thankfully I had family around me and I got through it and felt fine the rest of the day. The next morning however, I felt completely "off". My vision felt funny and I was weak and dizzy. Since that day, my symptoms have slowly gotten worse to the point where I am no long able to work. I can barely stand for more than an hour let alone 10 hours at work.

My struggle to determine what was wrong with me began at my first doctors appointment a week later. Guess what? I had anxiety! Imagine that. I even believed it. I started with herbal remedies and with no help went to prescriptions. Then it hit me that I am feeling anxious BECAUSE of my symptoms! More doctors visits later they still wanted to call it anxiety. I so wanted to believe them. I wanted it all to go away. I wanted to feel normal again. But, I didn't. I then had a couple more "panic attacks" which landed me in the emergency room. I was waiting at one for 12 hours! That was **** on earth! "Vitals look good, just anxiety." I knew these weren't panic attacks. They were all symptomatic of one, but there was NO PANIC. I don't know if that makes any sense, but that is the best way I can describe it. Soon thereafter, I began having bad palpitations and plenty of PVC's. I know many of you can relate to how scary those feel even though you have had hundreds of them. I went to a cardiologist, had a 24 hour holter monitor and then soon after a 30 day event monitor. The holter showed sinus tach and the event showed sinus with occasional PSVT. Diagnosis? ANXIETY! Thats when I put my foot down and demanded the cardiologist to do more tests. FINALLY, I was set for a tilt table. Oh my goodness, I would never EVER do that test again. "I'm sorry Ryan, we need your heart to go faster, here's a drug to do that!" My heart felt like it was going to explode. After the test, the doctor said, "The test is inconclusive, come see me in 3 weeks."(Come to find out he was going on vacation, ugh!) I lost it. I just began to cry. Every doctor was ignoring me! That's when I did some research and came across POTS. I had most of the symptoms. I called my cardiologist and demanded that I know why my test was inconclusive and FOR WHAT? Come to find out, he thought it was POTS, but my heart rate "didn't increase enough" so he ruled it out and that I MAY have it i was just having a "good day"! "Excuse me, would you like to check my heart rate when I first stand up in the morning?"

So that's where I am at now. I am getting a second opinion from another cardiologist who sees patients with pots tomorrow. I hear she is excellent. SO far it has been about 6 months since my initial symptoms. Let me just say that my heart goes out to all of you guys who have gone threw heck and back through dozens of doctors and YEARS of frustration on getting a diagnosis. I am sorry for the long post, but I just had to get it out. Thanks to all for listening to me rant.

Ryan

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Hi Ryan,

Welcome to Dinet, I am also brand new on here. I can relate to your frustruation with trying to get a diagnosis & help. What I have read on here is so true, about POTS being an invisible disease. It is so difficult & even many Drs don't really "get it". I have been ill, incapacitated & unable to work for the past 2 years & just got the diagnosis of POTS last month! I was first diagnosed with a rare kidney disease, Bartter's Syndrome, in the summer of 2009. Now, I am being told that the kidney disease is what "triggered" my POTs. It is a long, difficult road. I am glad to have found this site & am hopeful to learn more about dysautonomia in attempts to regain more quality of life.

Cassie

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Hi Ryan and welcome!

I'm so sorry that you are going through all of this. I too know just how hard getting a diagnosis can be. I am one of those people that took years to get a diagnosis, and just finally received the diagnosis last month, so I'm really kind of new to all of this too. Anyway...I just wanted to let you know that you aren't alone in what you are going through and we are here to support you so vent away!! I hope the new doctor can get to the bottom of this for you. Please keep us updated on how things go. (((((big hugs))))

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Hi Ryan: My heart goes out to you and everyone else who has gone through what a lot of us have gone through. Just know that WE are listening and WE understand. Best of luck to you and keep us posted :rolleyes:

Michelle

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