Discussions By Condition: Medical Errors

27 y.o. with agonizing abdominal pain and swelling

Posted In: Medical Errors 2 Replies
  • Posted By: Spanishflair
  • March 8, 2008
  • 11:49 AM

I'm grateful to anyone who might have suggestions. I am 27 years old and for the last 3 years I have run the gammut of tests and prescription drugs to try and find relief from chronic debilitating pain and bloating. GI docs have performed 2 EGT's, a colonoscopy, an abdominal ultrasound, CT scan, various anticholinergenic drugs, fructose/lactose/celiac intolerance tests, not to mention all of the holistic approaches: a year of yoga, acupuncture, massage therapy, stool tests, yeast/gluten/
lactose/sugar free diets, hypnosis, 2 holistic physicians, a chiropractic internist, etc. The results are consistently normal (seems a good thing, right?!); but when we hit dead ends, the problem is always thrown back in my hands. I am not satisfied with the "leaky gut," "IBS" diagnoses I've been given because the respective dietary/drug regiments provide absolutely no relief.

I am not a nut case I promise!!! On the contrary, I was willing to accept that this was all psychosomatic and thus sought out therapy. Nevertheless, after 2 years of psychotherapy and rounds of antidepressants, I have been reassured this is not "in my head." I am determined to get better because this is absolutely ruining my life.

I have always eaten well and all the more so since this began 3 years ago. However, my condition has declined and I literally react to every single food (pain/bloating are the predominant symptoms with occasional bouts of diarrhea/constipation)! I currently am on a diet of rice and eggs because that is all I can tolerate. I am losing weight, and fighting to make it through graduate school. My family is willing to support me in going anywhere, and seeing anyone to get to the bottom of this. Please help if you can!!! Thank you for listening! :o

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  • Have you had a HIDA scan? Your gallbladder could be malfunctioning if you still have it. Look into porphyria... you have many of the symptoms of it. It can be genetic or acquired. There are 8 kinds of porphyria. Your story is similar to many of the members of the American Porphyria Association. www.porphyriafoundation.com/ Things can be done to help you feel better and limit porphyria attacks; mainly if you have porphyria you need to avoid the things triggering your symptoms which can be certain drugs, foods, hormones, stresses, infections and such. Porphyria - Wikipedia, the free encyclopediaPorphyrias are a group of inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway). ...en.wikipedia.org/wiki/Porphyria - Similar pagesPorphyria Porphyria is a group of different disorders caused by abnormalities in the chemical steps leading to the production of heme, a substance that is important ...digestive.niddk.nih.gov/ddiseases/pubs/porphyria/ - Similar pagesWelcome to the American Porphyria Foundation The American Porphyria Foundation (APF) is dedicated to improving the health and well-being of individuals and families affected by porphyria.www.porphyriafoundation.com/ - Similar pagesAbout Porphyria Porphyria is not a single disease but a group of at least eight disorders that differ considerably from each other.www.porphyriafoundation.com/about_por/index.html - Similar pagesPorphyria - The Unknown Disease Genetic metabolic disorder. Overview of types, testing and diagnosis, and links.members.tripod.com/~PorphBook/ - Similar pagesMedlinePlus: Porphyria Porphyrias are a group of genetic disorders caused by problems with how your body makes a substance called heme. Heme is found throughout the body, ...www.nlm.nih.gov/medlineplus/porphyria.html - Similar pagesMedlinePlus Medical Encyclopedia: Porphyria Porphyrias are a rare group of disorders passed down through families in which an important part of hemoglobin, called heme, does not develop properly. ...www.nlm.nih.gov/medlineplus/ency/article/001208.htm - Similar pagesPorphyria - Genetics Home Reference Porphyria is a group of disorders caused by abnormalities in the chemical steps that lead to heme production. Heme is a vital molecule for all of the body's ...ghr.nlm.nih.gov/condition=porphyria - Similar pagesPorphyria - WrongDiagnosis.com Porphyria information including symptoms, diagnosis, misdiagnosis, treatment, causes, patient stories, videos, forums, prevention, and prognosis.wrongdiagnosis.com/p/porphyria/intro.htm - Similar pagesPorphyria A look at the different types of these disease and some of their characteristics.www.thedoctorsdoctor.com/Diseases/porphyria.htm - Similar pages
    TaylorDeelwithit 382 Replies Flag this Response
  • Three years is a long time, but it doesn't sound like anyone has consider the pelic area. Your symptoms are also indicated for Ovarian Cysts and Ovarian Cancer. Did anyone mention this? Try a search for both online and you'll find the other symptoms that go with both these problems. Don't wait as ovarian cancer is nothing to wait on.
    Anonymous 42789 Replies Flag this Response
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