Discussions By Condition: I cannot get a diagnosis.

was it bloodloss from surgery?

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: krb103
  • October 11, 2006
  • 05:00 AM

My 29yr old daughter has been ill for several years. 18 mos. ago she came to live with me after a mental breakdown. In the meantime she has been in the mental hospital several times and heavily medicated.
She decided to stop her meds and got well mentally but has had severe abdominal pain and chronic nausea and vomiting, hospitalized several times. These bouts follow a pattern: severe insomnia for weeks, disabling fatigue, then disabling abdominal pain, vomiting even water, then clinical depression. We discovered by accident that eating lots of candy stopped the attack or slowed it. Very strange. In the hospital she was treated fo the pain with very strong meds, stronger than morphine.
Doctors thought it was "fictitious", but her blood pressure elevated with the pain, she had bloody stools, tachycardia, and more non-mental symptoms.
I had her tested for acute intemittent poryphyria since she had all the syptoms; they did not test the ALA though. She was negative for AIP.

Then a few weeks ago she had a tumor removed from her eye socket in the bone. It was a hemangioma, non cancerous, but a very bloody surgery. The tumor was not pressing on anything, nor affecting anything except her brow bone from the inside. The removal was "very bloody" according to the neurosurgeon.
Within days, hours actually, she had no more abdominal pain, no nausea, her fatigue was lifting, the tachycardia ceased, no vomiting, she could eat again. My question is - which the doctors refuse to even acknowledge - is this: could the bloodloss during surgery point to hemochromotosis or some connection to acute intermittent porphyria (despite the negative test - they had to do it 4 times to get it right, did not do the ALA, and it is not a common disease in the US. They laughed at me when I requested the testing - they instead did every GI test in the book.
Americans seem to know little about either condition.

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  • My 29yr old daughter has been ill for several years. 18 mos. ago she came to live with me after a mental breakdown. In the meantime she has been in the mental hospital several times and heavily medicated. She decided to stop her meds and got well mentally but has had severe abdominal pain and chronic nausea and vomiting, hospitalized several times. These bouts follow a pattern: severe insomnia for weeks, disabling fatigue, then disabling abdominal pain, vomiting even water, then clinical depression. We discovered by accident that eating lots of candy stopped the attack or slowed it. Very strange. In the hospital she was treated fo the pain with very strong meds, stronger than morphine.Doctors thought it was "fictitious", but her blood pressure elevated with the pain, she had bloody stools, tachycardia, and more non-mental symptoms.I had her tested for acute intemittent poryphyria since she had all the syptoms; they did not test the ALA though. She was negative for AIP. Wow, I got the same response when I was having fibromyalgia symptoms. I am of Irish decent and found articles on Iron overload disease on the web. I have just had bloodwork for thyroid and kidney function after gaining 12 lbs in 3 weeks and swelling for 3 days. I read or saw on tv that someone has the patten on the test for iron overload disease, but it may have been one of those infomercials. Anyway, I thought of pancreas problems and then the iron overload disease when you said it was better after bloodloss, which is the treatment for overload. If I take Iron more than 3 days, I get a migrane. Also recently, we have had water system problems in the small town where I live, Too much iron is in the water. Find a research center that will speak to you and not act like you;re a nut. I hate arogent doctors who take your money but don;t listen to your questions and symptoms. I'm glad she's better. My daughter had severe mono at 14, with complication of hepatitis and hasn't been right since. She has also developed anaphylaxic to penicillins, in college, and has had many ovarian cysts, and is now more likely to have liver cancer, because it took three doctors before one agreed with what I thought was wrong in the first place. I go to that doctor exclusively. And to whomever He recommends! He saved her life. And, bedside manner isn't everything. I want a knowledgable and open-minded physician. Then a few weeks ago she had a tumor removed from her eye socket in the bone. It was a hemangioma, non cancerous, but a very bloody surgery. The tumor was not pressing on anything, nor affecting anything except her brow bone from the inside. The removal was "very bloody" according to the neurosurgeon. Within days, hours actually, she had no more abdominal pain, no nausea, her fatigue was lifting, the tachycardia ceased, no vomiting, she could eat again. My question is - which the doctors refuse to even acknowledge - is this: could the bloodloss during surgery point to hemochromotosis or some connection to acute intermittent porphyria (despite the negative test - they had to do it 4 times to get it right, did not do the ALA, and it is not a common disease in the US. They laughed at me when I requested the testing - they instead did every GI test in the book. Americans seem to know little about either condition.Oops, typed in the wrong spot. See above comments.
    Anonymous 42789 Replies
    • October 13, 2006
    • 05:40 AM
    • 0
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  • Please don't take this the wrong way, I'm just mentioning possibilities, but is there any chance at all that your daughter has been ingesting any substances that could cause her symptoms? I have suffered from severe depression myself, and have met many other suferers, so I know it can make you act in strange ways. I'm not necessarily talking about medications or drugs, it could be household substances.
    Anonymous 42789 Replies
    • October 18, 2006
    • 11:50 PM
    • 0
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