Have been to ER several times. Been checked for kidney stones, but none. Gotten an endoscope & colonoscopy but nothing found. Have had a sonogram of liver, pancrease and gallbladder and nothing found. Have had a IVP CT and kidneys fine. Been prescribed nerve pain meds with no help. I watched a Mystery Diagnosis the other day and there was a man with identical symtoms, and it turned out to be a GIST, even though he had all the same testing as I have & they showed nothing. I called my Gastro Doctor and told his nurse this but she said that he was very familiar with these & he would have seen them with the scope. The research I did on the internet says that these are not seen on scopes because they develope in the mucosa and are not visable unless they have spread and broken through. They say that the tissue of these tumors can look like nerve and muscle tissue. I asked if doctor would do a PET scan like man in the show, but he refused saying he would have seen it on the scope. I am at a complete loss. I cannot handle this pain anymore. Nothing helps. The pain is always there but at times can get so severe that I have been taken to ER. Has even waken me up from dead sleep. If anyone has any info, I would greatly appreciate it. My frustration is sending me into depression and I am approaching the point that I would do anything to make the pain go away. Currently my children are the only things that are keeping me going, but it is taking a toll on them. I cannot seem to stay awake anymore and the palpitations keep me from doing much of anything that takes any effort. Help.
When I read your post I had to contact you. 4 yrs ago I started with severe pain in my upper right back. Sometimes it would last 5 minutes-sometimes an hour. At times I would throw up and even end up in the ER. I had all kinds of blood work done. Some showing slight abnormalities that didn't explain the pain. First thing they checked for was gall bladder disease. My gall bladder tests came back fine. For 2 years I suffered, seeing specialists, doctors started having me beleive it was in my head, I was starting to wonder if I was crazy. The pain was so bad I was on oxy -contin and it did nothing for the pain, no position was comfortable and I would pace the floor in tears and soaked with sweat. The pain would awaken me at night and seemed to be unrelated to anything I did or ate!Finally I saw a rheumatologist who did a bone scan, during the bone scan they thought they saw a tumor in my kidney so i had to come back for a sona gram, sona gram showed no tumor in my kidney but I was full of gall stones. For some reason all the gall bladder tests I had prior were normal. The surgeon said they for some reason do not always show up. He said I could have been full of sand sized stones that went under the radar. By this time I was so ill from it. I had my gall bladder removed and it was definitely the problem. The doctors were side tracked some when they found I had a rare form of arthritis in my spine and I was 33 at the time. I am now suffereing from other unrelated health concerns that made me feel the need to join this site. Problems I do not want to wait 2 years to find the problem, I feel right now I am not sure I have 2 years. So hopefully this is help to you, and if anyone reads this and finds my thread please help me!
I HAVE SAME PAIN FOR VERY LONG TIME. I SAW THE SAME SHOW ON MYSTERY DIAGNOSIS AND WONDER IF I HAVE SAME THING. RECENTLY HAD MY GALL BLADDER REMOVED BUT PAIN DID NOT GO AWAY. PAIN RADIATES INTO UPPER RIGHT BACK. CANNOT TAKE MUCH MORE OF THIS PAIN. SEEMS TO COME ON WHEN SITTING OR STANDING FOR LONG PERIODS OF TIME LIKE A BAD CRAMP. DR. TO DO FURTHER TESTING.
I have had the exact same tests in and out of hospitals, having doctors dismiss me thinking all I want is pain killers. I have had kidney surgery about 15 times because I have probably had over 150 stones in my life. They come in clusters and won't come out. Even after the surgeries the right side pain is still there. It feels like a knife is stabbing me in the back and I can't even stand to have anyone touch my right side or the right side of my back from bra strap down. I have tried all of the alternative medicines, and again nothing. This has been going on for 15yrs. Thank God I found a doctor who does believe me. They have also found I have to herniated discs they thought it could be. Not even close to the area. I know this is not referred pain. They also found diverticultis but they say that is not it. I can't take this pain much longer. I already tried to end my life because the pain is to physically and mentally draining. My grandmother and her mother had the same problem with the pain on the site most of their lives. If you find any info please share. I need all the help I can get.
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