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Addison's Disease Message Board

Addison's Disease Board Index

OK, I don't mean to go overboard, but after you read my response to "thanks, Keraldy", maybe you'll understand.

Pheochromocytoma is a VERY SERIOUS problem! It's probably a false alarm. Really. It usually is. It almost always is. But please understand: The "Rare diseases/ conditions/ whatever" board here even gives me a lot of ???????? That's why your Doctors are puzzled. They memorized it for a Med school test! They never believed they would ever actually see one! But every case I ever heard of instantly said the Pheo word, because they memorize good, which is most of Med school, my Dr. friends tell me. (They even laugh at me!) That's OK, I laugh at them too
But if it is real, it's serious. Undiagnosed, the first sympyom is a stroke, which disables you, or kills you.Your Drs. just have to play the percentages, & they are almost always right.

Most Drs. even say the Pheo word a hundred times & never find a real one. I'm pretty sure you are among that 100. Please don't panic, I don't, but don't let yourself be # 101.

I know, I know. I'm in the same spot as you are, & I'm NOT panicing. But I've had a lot more years to practice than you & I'm not dead yet. Keep it all in perspective. I didn't want to warn you at all, thinking you would freak out. Keep that in mind. But I have to. Please don't freak out. Sorry.
My Dad
Hi "my dad",

I've done a lot of reading on pheo's and other adrenal gland disorders, so I was aware of the seriousness of the condition. Thanks for the warning though. I am awaiting an appointment with an endocrinologist at the beginning of April and am also seeing a naturopathic doctor to try and help with some of the symptoms (i.e. extreme fatigue, insomnia, tremors, nausea, heart palpitations, etc.).

The overall message I'm getting from these boards is that adrenal gland function doesn't seem to be well understood by the medical least in it's presentation. I've heard over and over again that people come back with "normal" tests, but the ranges are so diverse that it's not always accurate.

I hope you're finding some answers to your questions.

I'm sorry I took so long to reply. I've been busy with my Dad's problems. Let's keep contact on these boards. Nobody else seems to know what we're talking about. Let me know anything about another board here that you found to be better equipped to understand Pheo.

I must say I'm glad you seem to be taking a logical approach. And yes, for what it's worth, you might find a lot of false negative findings in your journey. But stay tough & steadfast, & you can get to the end of this.

At least the good people here are talking about the same glands! And they are pretty friendly, even to old guys like me who come on too strong, & "over the top" sometimes. I'm working on that.

I've found it doesn't really work here, because everyone is trying real hard to understand already. They are already on our side!

But I'm too used to dealing with health plan administrators for my Dad. It works with them, because that's the world they live in, I'm sorry to say. If I yell at them enough & threaten to sue everybody, including their Mothers, they eventually let me take my Dad to the Doctors he needed in the first place, & the lab he needed to test his blood & other stuff.

Never mind that's the lab the NIH & CDC trust to give them the correct answers about my Dad's problem. They don't want to look stupid, & that's a good use for my tax dollars. The insurance company says it's wasteful. Untill I yell enough. Go figure. After all, my Ma & Dad only pay them $17,000 per year for this, after Medicare.

I don't mean to be too cynical, but since I've been taking him to his Dr's appointments I've developed the opinion they are trying to "warehouse" him untill he dies. Heck, he's 85, & the prostate cancer they diagnosed 17 years ago, & only treated with radiation will eventually come back! They told me that! They just can't tell where it's hiding yet.

But enough for one session. I'm starting my "talk to the insurance guys" speech. Tomorrow maybe I can talk about Pheo. Let's talk about what we felt when it first "hit". See Ya!
My Dad

PS: My double spaced paragraphs are a habit from my Dad's board. Many of the people there have trouble reading because of their problem. They can only pick out key words & phrases, & try to respond. The double spacing helps them.

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