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  • Keraldy, heb12, Pheochromocytoma, THAT'S PROGRESS!!

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    Old 03-12-2005, 09:27 PM   #1
    My Dad
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    Keraldy, heb12, Pheochromocytoma, THAT'S PROGRESS!!

    OK, we're making progress! For me one new name in a week is progress! Never give up!

    Keraldy, thanks for your advice even though you dont know Pheochromocytoma from Adam. heb12, thanks for speaking up when you could see no other safety net in sight. Keep looking, heb 12. I'm here. With the help of people like Keraldy we can figure this out.
    Our Doctors are smarter, for sure. But they don't have more than thirty seconds per visit to "examine" us. Blame it on "managed health care", not the Doctors. They care, but don't have the time. We have the time, "managed health care" doesn't care, doesn't pay us, so we have all the time in the world to figure it out!

    Stick with me & maybe with the help of people like Keraldy we can beat this.

    Besides, what's the other option?? Please, heb12, or anybody else with information, answer soon. Have a nice. "Saturday Night Live", or the 0-4 min. that's left, depending on my crummy dial-up ISP See ya!
    My Dad

    Last edited by My Dad; 03-12-2005 at 09:32 PM.

     
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    Old 03-13-2005, 12:05 PM   #2
    Keraly
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    Re: Keraldy, heb12, Pheochromocytoma, THAT'S PROGRESS!!

    Hi, "My Dad"!

    What about doing a search on this healthboard (first a general one, then search the addison's section) using the word "Pheochromocytoma". Then any post within the past that deals with this subject will come up, too! There may be others out there who have dealt with this problem, but are no longer posting on this board? Also, try doing a general INTERNET search for the condition, and you may find a website actually dealing strictly with Pheochromocytoma! Perhaps there will be lots of info available. You might try looking at special medical sites, too, which will give you symptom lists, causes, treatments, tests for... Hope you Dad is getting good care and finding all the answers he needs! Take care, ~ Tracy

     
    Old 03-13-2005, 06:24 PM   #3
    heb12
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    Re: Keraldy, heb12, Pheochromocytoma, THAT'S PROGRESS!!

    Hi "my dad",

    So have you been diagnosed with a pheo or is it your hunch? My step-mom researched my symptoms and came up with that one for me, but so far everything's turned up negative. I'm just looking at returning to work part-time after a three month leave of absence (long story short: was having lots of symptoms, got in a car accident, more time off, etc.) and will be seeing an endocrinologist at the beginning of April. When I went into work to meet with the OH&S nurse, she was surprised I hadn't had any of the tests that "stress" your adrenals to see how they're functioning (or not functioning). Do you have any experience with such tests??

    HB

    PS. I'm guessing from the mounds of frustration evident with your medical system that you're from the US. I'm from Canada, so the medical system is a little different, but it seems apparent that the endocrine system is the least understood across the world from what I read here!

     
    Old 03-15-2005, 09:17 AM   #4
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    Re: Keraldy, heb12, Pheochromocytoma, THAT'S PROGRESS!!

    Hi, hebi2:
    I haven't been diagnosed with Pheo because I haven't seen a Doctor about it since I went through a six week series of attacks back in 1986.They were all pretty similar, with sudden realizations something was wrong, an "explosion" from within which would make my head feel like my scull actually exploded & then went back,but no pain, or one time it felt like one giant hand was placed on my chest, one was placed on my back, & then they SQUEEZED untill my backbone & ribs touched for a second, but whatever, my heart would always go to it's theoretical max. Is it 220 or 210 minus my age? I would always keep walking until I got to one big bay in the Machine shop I worked at. A welder who worked on the Iron range in giant open pit taconite mines in 50 degree belouw weather. He'd seen every Gawd-awful way a man could die, so I knew he wouldn't panic, so I would sit with him for 45 min or an hour untill my heart would go back to normal. He'd just keep welding & talking. He ttold me dying wasn't hard. He'd seen many me an die, & they never screamed more than a second or so. He even died twice, he said but it always.Pi**ed him off because they always brought him back. It was pretty neat going, he said. The coming back was a little inconvenient because it was 50 below & they just ripped his clothes off & kept shocking him.

    But hes said don't worry. If I died he'd kick me in the ribs real hard. That's how he could tell you were really dead. And he said He'd make sure my wife got the body. But afterward I was always real tired. One time it even happened at mile 4 of my usual five mile run Sunday morning.

    The problem really freaked me out too. I drove right past a big hospilal on the way home & every day I had had an attack at work I stopp the car & parked. I couldn't make myself leave the Hospital area for 45 min. or so.

    But I finally went to the Doctor & said she wanted to test me for Pheochromocytoma. Well, little did she know that the night before I bought the big 1200 page Readers Digest Medical Book & read all 1200 pages. When I was done all I had was two small paragraphs titled Pheochoromcytoma!

    Sha gave me a 24 hour urine test & sent it to the Mayo Clinic. Nobody called for a week or two, so I called & they said they forgot, & be patient. But I mad an appointment for a week later, & the Doctor was annoyed, but she said nobody ever actually had it, so go to mental health. I told her to go fish, & forgot about it, but I couldn't stop shaking or sweating.

    She must have done a good job, because a month later she got a job at the Mayo clinic.

    I gotta go take my Ma to her Doctors appointment now. At least she gets approved diseases. I'll write later, after the guy comes & replaces my Dial-up with Time Warner cable. See Ya!
    My Dad

     
    Old 03-17-2005, 09:11 PM   #5
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    Re: Keraldy, heb12, Pheochromocytoma, THAT'S PROGRESS!!

    Hi "My Dad",

    Mine began with some minor symptoms, such as fatigue, night sweats and heart palpitations. Then I had a series of three 'attacks'. Same as you, I could feel them coming...almost like a wave of adrenaline washing over my body, followed by a sense of panic. Then a pounding headache, tremors, severe nausea, overall feeling that something was horribly wrong. Mine always occurred at night, right before I was about to fall asleep.

    First doctor I spoke to about it told me it was anxiety and I should take anti-anxiety meds. I told her that was ridiculous; what the hell was I anxious about RIGHT before I was falling asleep?? Anyways, eventually, out of sheer frustration, I did try the meds...all my symptoms got worse and I ended up in the ER. Finally a CT scan of my abdomen was ordered (because I'd been complaining of a pain in my left side) and a left-sided adrenal adenoma was found. Believe it or not, that same doctor told me it was an "incidental finding" and nothing I should be concerned about. Idiot. I switched doctors.

    I went off work, tried to decrease every single stress in my life and haven't experienced another serious attack since then (3.5 months now). Have minor stuff happen when I'm mad, upset, nervous or frustrated (like tremors, headaches), but no "attacks". I'm looking at starting back at work by the end of the month...should be a good test of my adrenal function.

    In the meantime, I'm seeing a naturopathic doctor and waiting to see the endocrinologist at the beginning of April. Hopefully he actually knows his stuff and is willing to run a lot more tests other than the 24hr urine specs. Naturopath said those will only pick it up if you're on the ends of the spectrum (i.e. it's already addison's) and they are useless for diagnosing mild-moderate adrenal dysfunction. Onwards the battles go...

    And that's my story in a nutshell,
    HB

     
    Old 03-23-2005, 01:01 PM   #6
    My Dad
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    Re: Keraldy, heb12, Pheochromocytoma, THAT'S PROGRESS!!

    Hi, HB:

    Sorry I didn't answer for a couple days. I was busy helping my Dad with his medical problems. His problem is an "unapproved" disease also, Lymes Disease.

    They told him to go to mental health when it first started. They gave him tons of antidepressants, tranquilizers, MAJOR TRANQUILIZERS?? (I didn't know there was such a thing as major tranquilizers)! Then what are the ones they just call tranquilizers? Minor tranquilizers? Well, the major ones are pretty major, I'll say that!

    They didn't fix anything, but they gave my Dad an "unavoidable side effect" called Tardive Dyskenisia, also called "Fly Catchers Disease". I guess this is an "approved" medical condition because it's uncurable. Then there's nothing they can do. It's very "cost effective". My Dad has uncontrollable continuous flicking motions with his tongue and continuous lip licking. It's like a frog catching flys. This keeps his tongue, mouth, lips & cheeks comtinuously raw and bloody.

    All his teeth are pretty much gone also, Which seems pretty natural after 15 years! But the Doctors said it was "unavoidable"!! YES IT WAS TOO AVOIDABLE!! He could have run away and joined the French Foreign Legion!!

    Anyway, they then gave him a series of electroshock treatments that only succeeded in giving him a severe headache 24/7 for the last fifteen years. They said it was all in his head. Well DUH! They then kicked him out of mental health. I didn't know they had a catagory that was called "too crazy for mental health"!

    The worst part is one Doctor actually treated him for Lymes Disease early on. After 4 weeks my Dad went back and said all the pain, numbness, etc. were gone, keep it going!! The Doctor told him if it wasn't cured in four weeks he never had it, go back to mental health. Modern Medical treatment for Lymes, even caught early, dictates several MONTHS, OR MORE!!


    Sorry I got carried away. I do that when I think about what the Medical Profession has done to my Dad. But the worst thing they did is what they didn't do back in 1990. They never diagnosed his Lymes Disease. They took away his retirement.

    Before then he was just a silly 70 y/o Grampa. Now He's a decrepit 85 y/o man with continual pains that are like being on fire all over, but he's numb all over too & can't feel things to pick them up. He's also freezing all the time & wears heavy clothes, longhandled undewear, Insulated pants, a thick wool sweater, heavy sox, gloves, and a Green Bay Packers stocking cap. Oh, yeah, He's 98% blind & 98% deaf too. Some Retirement.

    He just cries all day & prays to God every night to just let him go to sleep and not wake up. Oh, Don't forget the flycatchers stuff and the 24/7 headache. Ain't modern Medicine wonderful??

    I'm taking him to a specialist this July in Springfield, MO. We can't go 'till July when it's warm enough for him. I get to do it all on my Nickle. That's what I love about Managed Medical care! After fifteen years the specialists say they can still help him, but it takes time when left untreated, & I think the treatments can be pretty brutal for an 85 y/o. Besides, how long does he have left anyway before his Prostate Cancer comes back. The Drs. say it WILL be back.

    I Guess Prostate Cancer is an "approved" medical condition, so they did a real good job on that!

    OK, I'll quit raving for now. Thanks for listening. Next time I may even talk about Pheochromocytoma. I guess our family gets too many "unapproved" medical problems.
    Bob; My Dad is Ed.

    PS: When I read this some parts seem really funny. But then I remember this is all real.

    Last edited by My Dad; 03-23-2005 at 01:22 PM.

     
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