Discussions By Condition: I cannot get a diagnosis.

Please help 41yo male with 4 years of cronic abdominal pain

Posted In: I cannot get a diagnosis. 29 Replies
  • Posted By: NID_FTL
  • March 8, 2008
  • 02:05 AM

I am male 41yrs old white, 6' 165, I moved to south florida 4 years ago to get away from cold weather and cronic resprotory infections. I was active with a personal trainner 4x a week and into Yoga. shortly after moving to florida I started having abdominal pain in the mid right slightly below the rib, with a pulling pain towards my belly button. I had been to the doctor many times, but since I am uninsured I can not afford the thosands needed just to run the prelimnary test, like CT scan and blood test and such, I was sent off with a diganosis of gastrointestinitus. I am a tough old guy and have tryed to deal with the increaseing pain and disconfort, sometimes wondering how I have made this far, sometimes wondering if I will make it thru the day, or if I should drive to the nearest hospital. about 2 years ago I was addmited in an emergency room with extream abdominal pain, gut wrenching. with garding, and extream reaction to doctors pressing. after Ultra sound found nonthing, I was dismissed with yet another diagonosis of gastrointestinitus. a few months after that I went to a doctor and he ran a helicor bactor test and mine was 2.5, he prescribed prev pak and I was unable to afford that so we worked it out with other antibotics. this treatment made me so sick I wanted to die. I was sweating that antibotic smell, my pee smelled like, as well as my breath and body. it did nonthing but make me worse over all, and no improvement of my abdominal pain or disconfort. this has affected my life to the point that I have not been able to work for most of the past 4 years. I am now so sick I have no Idea what to do. I am scared that i have no way to afford the care i need and this stress is playing into my condition making it worse. currently, I consider my mid abdominal pain a 10/10 since it has increased gradualy, I am hurting so bad that a normal life is long since past. I go to bed in pain, is hard to get to sleep, when i finaly do I sleep hard till I wake up exuasted and in extream starvation pains in addition to the constant pain. the thought of food in the morning makes me sick, and eating anything has consaqinces like cramps and bloated feelings. Some morning it can take me several hours to be able to eat anything, and so days it's already dark when i am having my first food. None of this has much affect on my constant abdominal pain, and if it does it only makes things worse. I have done much reading and everyone I talk to has an idea, but I am at a loss as to what to do next and how to afford the test and care I need, I can no longer exist like this, I want to get to the bottom of it, I can handel whatever it is, I just want to know.

Jim S...

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29 Replies:

  • Have the dr look into the possibility of porphyria; though your pain can be from many things it is a possibility. You need to be seen by a GI doctor again. The H. Pylori could be back also. http://www.wrongdiagnosis.com/p/porphyria/symptoms.htmhttp://ghr.nlm.nih.gov/condition=porphyria I am male 41yrs old white, 6' 165, I moved to south florida 4 years ago to get away from cold weather and cronic resprotory infections. I was active with a personal trainner 4x a week and into Yoga. shortly after moving to florida I started having abdominal pain in the mid right slightly below the rib, with a pulling pain towards my belly button. I had been to the doctor many times, but since I am uninsured I can not afford the thosands needed just to run the prelimnary test, like CT scan and blood test and such, I was sent off with a diganosis of gastrointestinitus. I am a tough old guy and have tryed to deal with the increaseing pain and disconfort, sometimes wondering how I have made this far, sometimes wondering if I will make it thru the day, or if I should drive to the nearest hospital. about 2 years ago I was addmited in an emergency room with extream abdominal pain, gut wrenching. with garding, and extream reaction to doctors pressing. after Ultra sound found nonthing, I was dismissed with yet another diagonosis of gastrointestinitus. a few months after that I went to a doctor and he ran a helicor bactor test and mine was 2.5, he prescribed prev pak and I was unable to afford that so we worked it out with other antibotics. this treatment made me so sick I wanted to die. I was sweating that antibotic smell, my pee smelled like, as well as my breath and body. it did nonthing but make me worse over all, and no improvement of my abdominal pain or disconfort. this has affected my life to the point that I have not been able to work for most of the past 4 years. I am now so sick I have no Idea what to do. I am scared that i have no way to afford the care i need and this stress is playing into my condition making it worse. currently, I consider my mid abdominal pain a 10/10 since it has increased gradualy, I am hurting so bad that a normal life is long since past. I go to bed in pain, is hard to get to sleep, when i finaly do I sleep hard till I wake up exuasted and in extream starvation pains in addition to the constant pain. the thought of food in the morning makes me sick, and eating anything has consaqinces like cramps and bloated feelings. Some morning it can take me several hours to be able to eat anything, and so days it's already dark when i am having my first food. None of this has much affect on my constant abdominal pain, and if it does it only makes things worse. I have done much reading and everyone I talk to has an idea, but I am at a loss as to what to do next and how to afford the test and care I need, I can no longer exist like this, I want to get to the bottom of it, I can handel whatever it is, I just want to know. Jim S...
    TaylorDeelwithit 382 Replies Flag this Response
  • The Discovery channel hosts a show call Mystery Diagnosis that relate stories of people that had rare medical conditions/symptoms that were later diagnois. They have a blog for fans of the show. Maybe if you post your symptoms there someone might be able to offer help. Go to "community.discovery.com" Good luck - you shouldn't have to live with such pain.
    Anonymous 42789 Replies Flag this Response
  • Find another doctor who will listen to you and help you. You have to be the squeaky wheel to get a proper diagnosis these days. It took me two years to diagnosed with a rare heart condition which is very treatable. I went to countless doctors and visited the ER by ambulance and walk-in eleven times last year. Persistence is the name of the game. For me, I met someone online who had my symptoms years before. She encouraged me to be persistent and keep going back to the ER. That's how I finally got diagnosed. My pain level was a 10/10 too when I finally got treated. I was turning white ready to pass out when I got wheeled into the ER. The admitting receptionist couldn't wait for the ER nurse to take me to a bed. She thought I was going to pass out on her desk.You could have anything from an allergy to gluten to a hernia. But you won't get a diagnosis until you put the pressure on your doctor or search for one who will help you.Don't give up!
    Anonymous 42789 Replies Flag this Response
  • I AM IN A VERY SIMILAR SITUATION MOVED FROM THE NORTH TO SOUTH GEORGIA,43YO,165LB,6FOOT TALL,ABOUT 5 YEARS AGO.MY WIFE HAD THE Helicobacter pylori VIRUS 2YEARS AGO, TOOK PREV PAC AND WAS FINE,I WAS NOT TESTED THEN BUT HAD SIMILAR SYMPTOMS,JUST NOT AS BAD.A FEW MONTHS BACK STARTED GETTING EXTREAM STOMACH PAIN AND WAS DIAGNOSED WITH Helicobacter pylori,AFTER TAKING PREV PAC SYMPTOMS HAD WORSENED EVEN THOUGH PREV PAC KILLED THE VIRUS. SENT TO GI DR. AND HAVE FOUND TO HAVE Celiac Disease.BUT I HAVE FOUND THAT H-PYLORI CAN RETURN IN SOME PEOPLE BUT IS RARE AND THAT VERY FEW PEOPLE THAT CAN HAVE IT FOR LIFE AND HAVE TO TAKE THE PREV-PAC EVERY TIME IT FLARES. I DON'T KNOW WHAT PART OF FLORIDA YOUR IN BUT THE MAYO CLINIC IN JACKSONVILLE FLORIDA IS ONE OF THE BEST FOR GI PROBLEMS THEY HAVE GOOD DOCTORS AND MORE TESTING ABILITY THEN MOST HOSPITAL IN THE SOUTH.IF YOU TRUELY CAN NOT AFFORD TREATMENTS TRY APPLYING FOR INDINGENT CARE AT YOUR LOCAL HOSPITAL, MOST HOSPITALS HAVE MONEY SET ASIDE FOR THIS,OR CAN USE THE TAX BENEFITS.SO GOOD LUCK AND HOPE YOU FEEL BETTER CMW
    CMPW33 1 Replies Flag this Response
  • well, I got to my wit's end yesterday (sunday) and went to the emergency room to try to get a CT scan. They wanted a 400 deposit for the CT, but I didn't have and they gave me one anyway. they gave me two percocets even that did not relive any of the pain. waited about 4.5 hours and the doctor came back and told me the CT was normal and the only thing came up on blood test was a slight pancreas enzyme. I feel hopeless and suacidal. I am afraid that I will live with this pain for the restof my life. They sent me home with a script for Vicoden and still in severe pain, gave me a telephone number for a local clinic. this not a free clinic and due to my health I have no money. I left a message at that number and they have not yet called back. I really don't know what to do. I had really hoped to get to the bottom of this. if anyone can help, what is the next test I should have? how do I get theese test w/o any money, Job, or insurance? should I go to another country to try to get treatment? Canada, mexcio? maybe, somebody please help. I can not take this any more. is there truely nonthing wrong with me? is this really all in my head? Please Please Please help me.Jim s...
    NID_FTL 14 Replies Flag this Response
  • Do CT scans detect hernia's, if not what test do I need for that?
    NID_FTL 14 Replies Flag this Response
  • You could be having a problem with your pancreas, gallbladder (stones), appendix, diverticulitis (colon), ulcers, kidney's (stones), or liver to name a few. Try to find a clinic that uses a sliding scale for payment which is based on your income. You need further tests to find out what this is. Many doctors offer a cash discount. No one on this forum will be able to diagnose your problem and you put your life in jeopardy.When was the last time you had a full fasting blood panel done? I would start there to see what shows up. I would then probably have an upper endoscopy and lower colonoscopy done to rule anything out in those areas. In my area of town, all the above would cost a cash patient approx. $1,500 for all of that, but not including a biopsy. That would be additional.Keep a journal of when and what you eat, exercise, water, blood pressure, temperature, pain or mood changes, etc. This may help your doctor discover what the problem is. Good luck. I hope you find your answer.
    Beth56 272 Replies Flag this Response
  • I got a call back from the local clinic here in Broward county. they have schduled me for intake on 9th of next month. and 14th I will get to see thier doctor for 70 bucks at 8;30 am I will have to stay up all night to make that appt. due to the morning sikness, and that's not including any test. when they took blood lastnight I was on 24hrs fast. they only took 3 vials. I assume one was to spin out and do blood cell count. I have not gotten the paper work yet, so I do not know what else they checked for. I will ask about the full blood panel work if I can make it a month to keep that appt. I feel no better to day than I have for the past 4 yrs. I keep this thread as reference and you have been so helpful. I will continue to post till this is resolved in one way or another. Thank You Jim s...
    NID_FTL 14 Replies Flag this Response
  • I'm glad you made the appointments. I know seeking medical care is expensive. I don't have insurance either. I just had a 5 day bout in the hospital myself. The bill came in at $30,000. Well, needless to say I just about fell off my chair. My cost after cash discount will end up around $8,000 or so. They are still working on it. And I have further tests and possible surgery ahead of me. I will have to hock my house probably to pay the bill.But you must find out what is wrong and deal with it. Doing nothing could mean death and that makes no sense. Debt is a problem, but death is so permanent. :p Forgive my humor please.Anyway, please come back and tell us how you are doing and if a diagnosis is found. :) Beth
    Beth56 272 Replies Flag this Response
  • Debt is a problem, but death is so permanent. Agreed...:)Thank you Beth...be talkin....Jim S...
    NID_FTL 14 Replies Flag this Response
  • The pancreas enzyme being elevated means it is inflamed for some reason. Could be pancreatitis, or someother inflamation going on in that same are. The pancreas gallbladder, liver and stomach need to be checked out. An ulcer could also elevate lipase depending on the location. Try this (it worked for me when I was in your shoes when my gallbladder stopped function in my early 20's) : Go to your state dept of health and social services (ask the low cost clinic dr to help refer you to be evaluated for subsidized emergent care). You will get a voucher and possibly sent for the tests you need (including xrays scans ultrasounds). If you are on welfare (do you have a case worker, talk to him/her if you can. Call them) ... you should be able to get on medicaid but they may make you spend down first. This is not in your head... there is something going on and it can and should be treated. Hug! tdwi :( well, I got to my wit's end yesterday (sunday) and went to the emergency room to try to get a CT scan. They wanted a 400 deposit for the CT, but I didn't have and they gave me one anyway. they gave me two percocets even that did not relive any of the pain. waited about 4.5 hours and the doctor came back and told me the CT was normal and the only thing came up on blood test was a slight pancreas enzyme. I feel hopeless and suacidal. I am afraid that I will live with this pain for the restof my life. They sent me home with a script for Vicoden and still in severe pain, gave me a telephone number for a local clinic. this not a free clinic and due to my health I have no money. I left a message at that number and they have not yet called back. I really don't know what to do. I had really hoped to get to the bottom of this. if anyone can help, what is the next test I should have? how do I get theese test w/o any money, Job, or insurance? should I go to another country to try to get treatment? Canada, mexcio? maybe, somebody please help. I can not take this any more. is there truely nonthing wrong with me? is this really all in my head? Please Please Please help me.Jim s...
    TaylorDeelwithit 382 Replies Flag this Response
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  • Hello everyone. I am still alive. has been a long and painful road. Took over 6 months to get qualified for the state program, after they lost my paperwork twice. finaly I got in , However earliest appt. I could get to see the doctor is 2 months away. I did get my blood taken for the test. I am going to go for a walk in this tuesday to see if there is anything I can do or take to reduce the constant and ever increasing pain. the original blood test taken in the hospital showed hightened pancreas enzymes and it's looking like I have Cronic Pancreastitis. since this has gone on so long, I am totaly disabled now. the best I do is tend my squash and tomatos on days I can. Most days I am too sick and or exausted to leave the house. Thanks the gods I still have a place to live, and food stamps. I read that Pancreas issues are generaly very bad, I have kept my sprit high and am filled with Hope. I hope to get this taken care of over the next few months. does anyone have any information on pancreas issues. or knolege on treatments and or diets. and or alternative treatments. I would like to get well and get back to work and life b4 the end of this year. Again sorry for takeing so long to update, Thanks to all who replyed to my previous post. Will post another update next week, Jim S...
    NID_FTL 14 Replies Flag this Response
  • well it's been almost 5 months since I last updated my situation. when I returned for my test results they had a driver take me straight to the Hospital for extreamly high Lypase and amalase enzyme in my blood levels. I was admited for 7 days for which I was NPO clear liquids only both for the test and the fact that Pancreas has to do with digestion and a long rest is one of the best ways to treat ailments of the pancreas. I am now on PeP's "Pancreas Enzyme pills" I take 2 b4 each meal and 1 b4 smaller meals and snacks. I still suffer from dibiltating abdominal pain. I still wake up starving and in serious morning pain. The PeP's help with digestion and have made going to the bathroom more pleasant and less acid reflux and heartburn. but I still feel like I have a large raw open sore inside my body. like a sore that won't heal. I know it sounds disquesting but that's how this feels. I turned 42 in the Hospital this year. I was NPO so no cake for me. I hope to be in better health for my birthday next year. I have to say the state of Florida is not so bad, they are finaly helping me thru this at this time, but I think a better health care system for prevention and out of the ER primary health care would make things much better. I go in for a colonscope and an endoscope on the 30th, my GI thinks this may all be related to an ulcer after all. but we will see. Thanks to all that replyed in the past, thanks Beth56. I am still woddeling along. Say hi, if any of you are still around. Jimbo...
    NID_FTL 14 Replies
    • October 26, 2008
    • 04:14 AM
    • 0
    Flag this Response
  • Hi NID_FTL,I am glad things are moving along for you. If the doctor thinks this may be ulcer related, then I suggest when you have the endoscope done, they check you for H. pylori (a bacteria) which can cause ulcers. They may have already spoken to you about this or you may have heard of it. If not, Google it, there is a lot of info on the Internet. And during the colonscope, they should also be checking for diverticulitis and parasites. I know not pleasant, but as long as they are there? :pI'm sorry this has caused disability for you and things are taking so long to figure out. But I am glad you are receiving care and narrowing it down. I hope you find answers soon and can begin the healing process.Thanks for checking back in. Please let us know the results of your tests. Take care. Beth
    Beth56 272 Replies
    • October 26, 2008
    • 00:59 PM
    • 0
    Flag this Response
  • NID_FTL,Update?
    Beth56 272 Replies
    • November 21, 2008
    • 08:37 PM
    • 0
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  • well after 5 years of it, a good friend of mine stumbled onto some information that indicated that chromium and resveratroll supplments may help, and sure enough after just 3 days I noticed an improvement now after 2 weeks I feel like my ole self. I still have some abdominal pain and some gastric problems but everyday seems to be an amazing improvment over the day b4. I am confidant that in a few months I will be 100% again. I have done some extensive reasearch over the past few weeks. my mother has diabetes and is considering taking it also. after 2 weeks in the hospital and 10's ot thosands of dollars of test later. it all comes down to nutrition. I have read that 70% of Americans are deficient in chromium. and is believed to be the leading cause of diabetes. Thank you to all that responded to this post, thank you Beth56. I am gonna go to the beach today. I will leave updates as I progress.
    NID_FTL 14 Replies Flag this Response
  • NID_FTL,That's great news. I'm so glad for you. I hope things continue to improve. So I am assuming your diagnosis is Cronic Pancreatitis as you previously stated?Your attitude sounds wonderful. So much better than a year ago. :)Please take care of yourself. Keep us updated on your progress.
    Beth56 272 Replies Flag this Response
  • "SAP" severe acute pancreatitis, of unknown cause.
    NID_FTL 14 Replies Flag this Response
  • I started incorporating ACV into my Diet a week ago. plain old ACV and balsamic vinegar in dressing and such. after years of suffering I am feeling much better over all. Normally I am always starving especially after eating healthier foods and veggies. now I feel much more satisfied and my digestion has improved. I believe ACV can benefit most people on "Proton pump inhibitors" and the like. The Doctors have been trying to get me to take them for years. never seemed like a good Idea to disable part of my digestion process. I always disliked sour and vinegary things, turns out it's what the doctor should have "Ordered" long ago..
    NID_FTL 14 Replies Flag this Response
  • I started incorporating ACV into my Diet a week ago. plain old ACV and balsamic vinegar in dressing and such. after years of suffering I am feeling much better over all. Normally I am always starving especially after eating healthier foods and veggies. now I feel much more satisfied and my digestion has improved. I believe ACV can benefit most people on "Proton pump inhibitors" and the like. The Doctors have been trying to get me to take them for years. never seemed like a good Idea to disable part of my digestion process. I always disliked sour and vinegary things, turns out it's what the doctor should have "Ordered" long ago..I am going through the same thing it seems. Looking for answers now. I had Acute pancreatitis and a year later now I am still having issues. I have been scoped and ct'd to death. They see nothing wrong in the test and diagnosed me with small bialary duct chronic pancreatitus now but symptoms persist. I am on the enzymes but some days it just seems they do not help. They do nothing for the pain but do firm up the stool somewhat. I am interested in the chromium and ACV you mentioned. What is that stuff all about?Thanks. Glad to hear you are on your way back to 100%
    Anonymous 42789 Replies Flag this Response
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