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Old 07-16-2008, 04:32 PM   #1
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Not sure what is wrong with me

I have been to a lot of doctors who cannot figure out what is wrong with me for the last two years. My cardiologist has had me on several blood pressure meds that don't seem to work. I have worn heart monitor which shows sinus tachycardia. I had spine surgery and went into some kind of crisis where my heart rate would go way up just from trying to grab a cup of ice. My oxygen level was low. I couldn't breathe, had a horrible migraine, and was vomiting profusely. They gave me clonodine and steroids which eventually got me out of the crisis. When I got home they weaned me off of clonodine and things started to slowly get bad again. Some of the blood pressure meds made me feel worse instead of better. Right now I am on Bystolic, because it is the only one that helps my diastolic pressure.

I know that I produce no ATCH or cortisol which has my doctors thinking I have secondary adrenal insufficiency, but I get high blood pressure and a fast heart rate when I stand up. The longer I stand, the worse it gets. I cannot exercise, sleep, or stand for long. If I decide to go somewhere, I must rest all day or the day before in order to do it. Then, if I overdo it, I feel sick. My symptoms are just like the ones for a pheochromocytoma, but they are doing a MIGB and can't find it. I go tomorrow for an MRI. If it is not there, could I have hyperadrenergic POTS, since some of my labs show an elevation of plasma norepinephrine?

 
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Old 07-20-2008, 03:23 PM   #2
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Re: Not sure what is wrong with me

I am so sorry. What did the MRI say?

 
Old 07-20-2008, 07:21 PM   #3
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Re: Not sure what is wrong with me

They did an MRI and then had me do a CT scan because they weren't sure if they saw a pheo. The CT scan showed a 9mm mass in my left adrenal gland, but one doctor who read it says it could be fatty tissue. I feel to bad to have fatty tissue.

 
Old 07-20-2008, 07:22 PM   #4
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Re: Not sure what is wrong with me

Oh, the doctors are gathering up all of my records to send to MD Anderson in Houston, TX. Then, I guess I wait and see what they say I should do next.

 
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