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Hello, I am morgan.  I was here several years ago and then left when I got the correct diagnosis, which wasn't hyperandrenergic POTS. However, it was also the wrong diagnosis!  I took humongous doses of potassium to keep it at just normal range and suffered from malignant hypertension. I did not have syncope because my BP shot up instead of dropping, hence the hyperandrenergic stuff. I had cardiac ablation to slow my heart rate down (big mistake) and then had to get a pace maker.  I was on 4-5 BP meds at a time. So what they were giving me for my "real" diagnosis wasn't working real well. You can't get around with BP's of 250/130 for 18 years and not run into trouble. 2 Years ago this month, I had a heart attack.  I had been a nurse for 30 years before I had to quit. I worked on a cardiac floor for 13 years. I KNEW I was having a heart attack. But I was so burned out on bad doctors, I laid in my bed and said, well whatever.  (PLEASE don't EVER be that stupid!)  5 days later I gave up and went to the ER. I had damaged my heart and my kidneys. I got a stent placed for 100% blockage. 5 months later, I got a second one near the first one.

 

A year and a half ago, I asked my new pcp if I could see a nephrologist because of kidney stones (had to have surgery to laser one that was stuck) and I have a great pcp.  I live in a little town of 26,000 or so. I had no hope what so ever. The only thing was, I now officially have heart disease and kidney disease. I was with the kidney guy less than 5 minutes and he said, there's something wrong with your adrenal glands. I said no, I asked my doctor THIRTEEN years ago to test and he said it was too rare. He said, let me a test. I said ok.  In one day I had a REAL diagnosis. Primary adrenal hyperplasia.  I take one pill a day that's about 100 years old, and I am off all the BP meds, and the potassium. 

I still don't fit the spectrum of POTS, however, I am back because my son does. SO I am hoping to be here to talk about what's going on with him. I don't know any of the new treatments for this or what they have found in the last ten years or so. 

I do want to say this, however.  I am 61 years old. I have been fighting all this since my 20's. I have given up and stopped looking for answers more times than I can count. But I have always gotten back up and said...they will not win..I will look till I get the answers.  And sometimes they come in the strangest places. Some days I am sad and bitter that I had to get SO unhealthy for people to actually believe I was sick.  But most days I just feel validated. I think it's ok to sit back sometimes and take a breather from the suffering, not caused by the illness, but by the people you have to deal with. But never give up! Very few people would choose to feel this way for attention or psychiatric reasons. Trust me when I tell you I've been diagnosed with every one of them over the course of the last couple of decades. When they actually got it right, I sat down and wrote a letter to the doctors who had tried to crush me. Ahhhh, that felt good. 

I will start posting on my son later...but there may be a few people here who still remember me and for those that have no idea who I am, now you do....sweet Corina!

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Amazing journey...thank you so much for sharing. In truth, I have been thinking about giving up on the quest but I will try once again. You are a very strong person. You are helping many have hope!

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Happy to have you back, though for all the wrong reasons. I am 100% with you, you may need to take a good breath but never ever give up fighting! We have several moms here in search of answers to help their kids, you are in the right place! Best to you and your family!

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Wow!  Glad you found THE doctor that put it all together!  I sure do remember you.

Can I ask why he thought of Adrenal Hyperplasia?  I honestly thought, reading your story, when he said something was up with your adrenals, that the next sentence was going to say he thought it could be a pheochromocytoma!  I have a slightly enlarged adrenal per CT scan, and a nodule on the other, and every couple of years a doctor tests me for a pheo and Cushing's disease.

So, I am curious about the work-up he did for Adrenal Hyperplasia!

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