Discussions By Condition: I cannot get a diagnosis.

Help!My Son is Fading away before my eyes

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Mary T.
  • September 30, 2010
  • 08:43 PM

Help!!! My son is fading away before my eyes and nobody seems to care! “NO DIAGNOSIS.” He is 5’11” and right now weighs between 155 and 160 lbs. My son is now 32 years old. He has been suffering with abdominal pain for the past 8 years. The pain was sporadic at first but has been almost constant for the last 3-1/2 years. The only thing about his health that we know for sure is that he is Lactose Intolerant. His symptoms are: abdominal pain which is either epigastric or in the right upper quadrant. Pain that ranges from a low level constant pain to pain so severe that it will bring you to your knees; fatigue; malabsorption; severe weight loss-his weight dropped from 220 to his lowest weight of 152 lbs. At that time he was put on TPN (tube-feeding) to build him back up. I was told by the doctor that this was necessary so that the doctors would have time to diagnose his problem since his weight had now dropped much too low. In 3 months on the TPN, his weight was back up to 180 lbs. but quickly dropped again when he was taken off the TPN (tube-feeding). In addition to the above, sometimes the groin lymph nodes look swollen; sometimes there are bowel problems i.e. gas, diarrhea; bloating; nausea; when he eats, he gets full quickly and eating causes even more pain; there have been infertility issues, he and his wife had to do IVF for both pregnancies. He is a Paramedic so he is routinely checked for HIV, Hepatitis and TB. His immune system is extremely depressed and as a result, he contracted Spinal Meningitis while on the job.
A variety of specialists have checked him for Leukemia, Lymphoma, H-Pylori, Celiac disease, Diverticular disease, Crohn’s disease, Whipples disease, Small Bowel Bacterial Overgrowth Syndrome, Pancreatic Insufficiency, Colitis, Gastrointestinal Neoplasm, Meckel’s Diverticulum, Irritable Bowel Syndrome (IBS), all types of Ulcers, Acid Reflux, Hereditary Angina Edema (HAE), Gastroparesis (stomach emptying). He has had numerous medical tests performed: at least 3 upper and lower GIs; several Endoscopies including a Push-Endoscopy; several Colonoscopies including a Push-Colonoscopy; Endoscopic Retrograde Cholangiopancreatography (ERCP); the Smart Capsule that you swallow for problems in the GI Tract; numerous abdominal CT Scans; many blood tests; PET Scan; he has been checked for Aortic Aneurysms since both maternal and paternal grandfathers died with Aortic Aneurysms; Lymph Node biopsy and Bone Marrow tests. None of the above conditions were the cause of his problems. Nothing substantial has showed up on any of the tests performed, the results always come back as “non-specific” symptoms. Not finding anything, we got all of the doctors to agree to Exploratory Surgery in 2008. After years of being told that his pain was not caused by his appendix, they removed his appendix during that Exploratory. According to the Surgeon, “he had never seen an appendix look like that, it was coiled around and covered in stool.” We thought that would fix his problems but it has not, he is still in pain and still losing weight. Could an appendix in that condition have leaked poison into his system? Could that be the cause of all of his problems? Does anyone out there have an idea what is causing his pain? And please don’t suggest NIH, they are not interested, my son talked to a doctor and he said that NIH was not interested – according to them, his case is not rare enough.

Thank you,
Mary T.
A desperate mother

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  • Help!!! My son is fading away before my eyes and nobody seems to care! “NO DIAGNOSIS.” He is 5’11” and right now weighs between 155 and 160 lbs. My son is now 32 years old. He has been suffering with abdominal pain for the past 8 years. The pain was sporadic at first but has been almost constant for the last 3-1/2 years. The only thing about his health that we know for sure is that he is Lactose Intolerant. His symptoms are: abdominal pain which is either epigastric or in the right upper quadrant. Pain that ranges from a low level constant pain to pain so severe that it will bring you to your knees; fatigue; malabsorption; severe weight loss-his weight dropped from 220 to his lowest weight of 152 lbs. At that time he was put on TPN (tube-feeding) to build him back up. I was told by the doctor that this was necessary so that the doctors would have time to diagnose his problem since his weight had now dropped much too low. In 3 months on the TPN, his weight was back up to 180 lbs. but quickly dropped again when he was taken off the TPN (tube-feeding). In addition to the above, sometimes the groin lymph nodes look swollen; sometimes there are bowel problems i.e. gas, diarrhea; bloating; nausea; when he eats, he gets full quickly and eating causes even more pain; there have been infertility issues, he and his wife had to do IVF for both pregnancies. He is a Paramedic so he is routinely checked for HIV, Hepatitis and TB. His immune system is extremely depressed and as a result, he contracted Spinal Meningitis while on the job. A variety of specialists have checked him for Leukemia, Lymphoma, H-Pylori, Celiac disease, Diverticular disease, Crohn’s disease, Whipples disease, Small Bowel Bacterial Overgrowth Syndrome, Pancreatic Insufficiency, Colitis, Gastrointestinal Neoplasm, Meckel’s Diverticulum, Irritable Bowel Syndrome (IBS), all types of Ulcers, Acid Reflux, Hereditary Angina Edema (HAE), Gastroparesis (stomach emptying). He has had numerous medical tests performed: at least 3 upper and lower GIs; several Endoscopies including a Push-Endoscopy; several Colonoscopies including a Push-Colonoscopy; Endoscopic Retrograde Cholangiopancreatography (ERCP); the Smart Capsule that you swallow for problems in the GI Tract; numerous abdominal CT Scans; many blood tests; PET Scan; he has been checked for Aortic Aneurysms since both maternal and paternal grandfathers died with Aortic Aneurysms; Lymph Node biopsy and Bone Marrow tests. None of the above conditions were the cause of his problems. Nothing substantial has showed up on any of the tests performed, the results always come back as “non-specific” symptoms. Not finding anything, we got all of the doctors to agree to Exploratory Surgery in 2008. After years of being told that his pain was not caused by his appendix, they removed his appendix during that Exploratory. According to the Surgeon, “he had never seen an appendix look like that, it was coiled around and covered in stool.” We thought that would fix his problems but it has not, he is still in pain and still losing weight. Could an appendix in that condition have leaked poison into his system? Could that be the cause of all of his problems? Does anyone out there have an idea what is causing his pain? And please don’t suggest NIH, they are not interested, my son talked to a doctor and he said that NIH was not interested – according to them, his case is not rare enough. Thank you,Mary T.A desperate motherHey Mary, I just stumbled across your post. I don't have any answers for you because everything that was popping into my head you ruled out later in your post. It's so hard when the medical field put our loved ones in the 'too hard basket'. I hope your son finds an answer soon. I work in emergency services as well and thus admire his line of work.Stay strong, keep your chin up and keep us posted!<3 Toonz
    Anonymous 42789 Replies
    • September 30, 2010
    • 10:54 PM
    • 0
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  • Hey Mary, I just stumbled across your post. I don't have any answers for you because everything that was popping into my head you ruled out later in your post. It's so hard when the medical field put our loved ones in the 'too hard basket'. I hope your son finds an answer soon. I work in emergency services as well and thus admire his line of work.Stay strong, keep your chin up and keep us posted!People of middle-eastern heritage shoul be aware of "mediteranean fever" which is frequently missed.
    Anonymous 42789 Replies
    • October 2, 2010
    • 00:22 AM
    • 0
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