Thank you Jeane.
I’m sorry to hear about your health difficulties and am so glad you are receiving the care you need at Mayo. I originally started at the Mayo Clinic very hopeful of finally finding some help only to be disappointed. She is so traumatized that more testing is just not possible right now, unfortunately. She doesn’t have a regular doctor who cares or believes her story other than her neuro surgeon who can’t help in this area. So far I haven’t been successful in getting anyone in the Mayo Clinic to be willing to help out in any way. I’m hoping to find some resources here.
I was just diagnosed with a mass on my adrenal gland. They said it was quite large. But most of my understanding has come from my own research.
They immediately scheduled me an MRI for tomorrow.
But I went in ER in hypertension crisis and they sent me home and didn’t do anything to get my blood pressure down.
I’ve been suffering 3 years and been misdiagnosed a couple times
I’ll pray for your wife. These symptoms are sometimes unbearable
I had one on each of my adrenal glands. (at separate times) I had zero labs that can back abnormal, luckily, I watched my sister go through these symptoms and knew what to look for. We have MEN 2A. My 24 hour urine came back normal as well. The first one they removed my adrenal I had two tumors and then years later they took my other adrenal and same thing, had all the symptoms of a pheo but all labs and urine normal. They still removed the other one listening to me and again multiple tumors. LISTEN to your body!
I had one on each of my adrenal glands. (at separate times) I had zero labs that can back abnormal, luckily, I watched my sister go through these symptoms and knew what to look for. We have MEN 2A. My 24 hour urine came back normal as well. The first one they removed my adrenal I had two tumors and then years later they took my other adrenal and same thing, had all the symptoms of a pheo but all labs and urine normal. They still removed the other one listening to me and again multiple tumors. LISTEN to your body!
@charmay31, I'm sorry to hear that both you and your sister were diagnosed with MEN2A (multiple endocrine neoplasia type 2A). Thank goodness you listened to your body and were working with a cancer team that listened to you.
Did your family have further genetic testing? How are you doing now?
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I was just diagnosed with a mass on my adrenal gland. They said it was quite large. But most of my understanding has come from my own research.
They immediately scheduled me an MRI for tomorrow.
But I went in ER in hypertension crisis and they sent me home and didn’t do anything to get my blood pressure down.
I’ve been suffering 3 years and been misdiagnosed a couple times
I’ll pray for your wife. These symptoms are sometimes unbearable
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Like -
Helpful -
Hug
1 ReactionI had one on each of my adrenal glands. (at separate times) I had zero labs that can back abnormal, luckily, I watched my sister go through these symptoms and knew what to look for. We have MEN 2A. My 24 hour urine came back normal as well. The first one they removed my adrenal I had two tumors and then years later they took my other adrenal and same thing, had all the symptoms of a pheo but all labs and urine normal. They still removed the other one listening to me and again multiple tumors. LISTEN to your body!
-
Like -
Helpful -
Hug
1 Reaction@charmay31, I'm sorry to hear that both you and your sister were diagnosed with MEN2A (multiple endocrine neoplasia type 2A). Thank goodness you listened to your body and were working with a cancer team that listened to you.
Did your family have further genetic testing? How are you doing now?
-
Like -
Helpful -
Hug
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