Discussions By Condition: I cannot get a diagnosis.

Please help-intestinal problems and other symptoms

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Anonymous
  • February 20, 2007
  • 06:16 PM

My husband, 39, has been sick for the last four years. It started with extreme constipation. He has traveled for work for the last ten years and has always had constipation issues that we attributed to travel.

Then he was constipated for seven days so he saw a doctor. She sent him to the ER for X-rays. A mass was found in his lungs. The mass later disappeared.

For the next three years he experienced:
Constipation, then diarrhea
Intense stabbing pains in the abdomen
A “hard” lower abdomen
Extreme loud belching
Dry heaves
Muscle spasms throughout his body followed by muscle weakness
Sometimes eye twitches, too.
Overall feeling badly in the abdomen
A few skin rashes—including fungal-though not for long periods of time
He has two lumps near the stomach that we have been told are fat deposits. They feel sore to him and sometimes the stabbing pains are here.

After three years of this, we went to a new doctor who scheduled an upper GI (this had been done in the past with no result). This time the test did reveal something.

He was diagnosed with gastric volvulus. His stomach had rotated down instead of up—like the usual volvulus. There is no history of internal surgery, car accident, etc before this.

A tube was put into his stomach to hold it next to the abdomen wall so that scar tissue would form and the stomach would stay in place.

There were complications that put him back in the hospital because the tube poked a hole through the stomach and there was a serious infection. (He was sent home but came back to the ER a few days later due to extreme pain. Pus started pouring from the wound that smelled like feces while in the ER).

He spent an additional four days in the hospital for infection and the surgeon says that they do not know what the infection was. Several large bags of pus were filled over the four days. They treated it with antibiotics.

The infection came back two more times sending him back to the doctor once and the hospital once. It was treated with antibiotics. He also developed a fungal infection due to the antibiotics.

Despite the infection, his white blood cell count was never elevated. He never had a fever until just a few minutes before the pus started pouring out of the wound.

Since then, he continues to have all of the symptoms except the belching and dry heaves.

He has been tested for numerous things including celiac, porphyria, gall bladder, etc. We were told it could not be a parasite b/c he would have died by now.

We have no way to check to see if the gastric volvulus should have been caught before b/c one of the previous doctors lost all of the films from X-rays, upper GI, CT scan, etc.

We are at a loss. We really like our new doctor, but he doesn’t know what this is either. Any ideas or help would be greatly appreciated. Our new doctor has been willing to try almost anything.

This has been going on for so long.

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5 Replies:

  • I forgot to say that before this he was very healthy and active. The only problem he had were outdoor allergies which have actually gotten better since he has been sick-I'm sure it is a coincidence.
    Anonymous 42789 Replies
    • February 20, 2007
    • 06:25 PM
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  • I believe I have had a Parasite problem since high school. (I am an active 66 year old, sick for 27 years or more). Parasites can live inside one for decades. They can die, encapuslate (becoming cysts), besides all the cysts they produce by getting in all the organs in your body. I saw an Infectious disease dr. when I fist began having the (white drop-offs) you can get in your stool with Tapeworm. That was three years ago. I am still trying to find ANYONE with the capacity to diagnose and treat this. There are great immunoflourescence testing that will name the parasite in blood and stool. I haven't had the benefit of this since this is a nasty little problem that most doctors don't know or care about - AND it takes too much of their precious time. If I don't get this solved I will end up with Multiple Myeloma. My immune system is raging. All I can say is this: If your husband feels there is a small chance this could be parasites, he should not quit. A Johns Hopkins might help, but they are hoping to have some preliminary testing. Try to get a local doctor you trust and beg him to do testing. A lot of them want to do the IGE.That is a very nonspecific test. An IGE that is antigen specific will show something parasitic. Maybe convince the doctor you will go to some other facility if he has some hint of parasite infection. Good luck JH
    Anonymous 42789 Replies
    • February 24, 2007
    • 09:45 PM
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  • JH-I will ask him to ask the doctor about the immunofluorescence testing. Thank you very much for your post. I am sorry you cannot get a diagnosis. We have had more luck with our new local doctor. My husband was sent to a major hospital in another city before the volvulus was found. The doctor said he had IBS and wanted him to be part of a study or something like that. I am glad that we decided to try a local doctor and did not stay with them. Otherwise, the volvulus would never have been found. Interestingly enough, we had no luck with friends' and families' recommendations for doctors. We finally decided to just randomly pick someone out of the phone book. That's how we got the doctor we have now that we like. I hope you are able to get a diagnosis. If we can get this test and it shows what is wrong with him, I will be so grateful to you. After four years, we feel so frustrated. I cannot imagine suffering as long as you have. We appreciate any help or suggestions.
    Anonymous 42789 Replies
    • February 25, 2007
    • 05:26 PM
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  • We have a new symptom. He is having weakness in his left leg to the point that he has trouble walking. Some recent blood work came back that his muscle enzyme is elevated as though he had just been working out. He spends most of his time in bed and rarely does more than walk a short distance.If this sparks any ideas, please, please write.We feel very desperate and any suggestions-even long shots-are welcome. Thank you.http://forums.wrongdiagnosis.com/images/misc/progress.gif
    Anonymous 42789 Replies Flag this Response
  • Has he been checked for thyphoid salmonella poisoning???
    Anonymous 42789 Replies
    • October 6, 2008
    • 06:25 PM
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