Discussions By Condition: I cannot get a diagnosis.

chronic nausea,vomiting, abdo pain, night sweats for 6 years.

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Anonymous
  • November 12, 2008
  • 09:30 PM

My brother is 38 years old and has been unwell for six years during which time his illness has got worse and it is now at a cronic stage and effects every aspect of his life. At the begining he would be admitted to hospital for severe vomitting and abdominal pain 2-3 times a year. In between admissions he would have night sweats but be feel o.k during the day. The illness has progressed and he now has constant nausea on a daily basis despite taking the maximum dose of ondanderstron. In the past year he has had over 70 hospital admissions where he recieves i.v ondanderstron and morphine. On the days he requires hospital admission he usually begins to feel more unwell after a bowel movement. previously his bowel movements were loose but due to the amount of medication he takes he is frequently constipated. I have taken him to hospital on many occasions and the best way I can describe his presentation is to say it is like being with someone who is in labour as he is often very distressed with the pain. Over the years he has had many tests e.g scans, endoscopy, barium meal, H.I.V test, lead poisoning test. Nothing has given any clues to his illness. In the earlier days medics felt his illness was conected to his pancreas but they no longer think this. The only thing i am aware of is that he usually has raised white blood cells on hospital admissions. We feel lost and helpless as his consultant has said there are no other investigations to be done. Surely there has to be a reason for his constant ill health? They have stopped checking his bloods in hospital now as they feel there is no point. They concentrate on dealing with the acute admissions and patch him up, only to send him home and wait for his next admission. ( which on occasions has been less than 24 hours) We are determind to find the cause and I am constantly searching for information that may lead to a diagnosis. He was given the diagnosis of cyclic vomitng in the past but when he disscused his symptoms with a doctor who deals with this disorder, he felt that his symptoms do not fit this diagnosis. Prior to becoming unwell he was on holiday in Gambia and we have wondered if there is a conection to this. We would be so greatful if anyone could help us.
Thank you for taking the time to read this.
Biddy.

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12 Replies:

  • Ok here is my suggestion. Sounds to me like disseminated tuberculosis. The night sweats are particularly characteristic of this. TB can infect the bowel usually after an initial lung infection which healed without being noticed. The visit to Gambia is also a clue. I think that many or most of the other symptoms are being caused by the large amounts of medications. The only way to separate symptom from side effect is to stop ALL the drugs and see what remains after a couple of days.Thats my 2c, although if the doctors you saw didn't check for TB they should be bashed around the head with a bedpan.
    gungwane 62 Replies
    • November 13, 2008
    • 11:48 AM
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  • Thanks so much for getting back to me as we are feeling so desperate, its great to have someone else's view point. My brother was taken back to hospital today for the 4th time in 7 days . I will definately pass on your suggestions to his doctor.
    Anonymous 42,789 Replies
    • November 13, 2008
    • 00:55 PM
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  • I found a website listing some diseases that can be contracted in Gambia: degree of risk: very high food or waterborne diseases: bacterial and protozoal diarrhea, hepatitis A, and typhoid fever vectorborne diseases: dengue fever, malaria, Crimean-Congo hemorrhagic fever, and yellow fever water contact disease: schistosomiasis respiratory disease: meningococcal meningitis (2008) Schistosomiasis can cause Above all, schistosomiasis is a chronic disease. Many infections are subclinically symptomatic, with mild anemia and malnutrition being common in endemic areas. Acute schistosomiasis (Katayama's fever) may occur weeks after the initial infection, especially by S. mansoni and S. japonicum. Manifestations include:Abdominal painCoughDiarrheaEosinophilia - extremely high eosinophil granulocyte count.FeverFatigueHepatosplenomegaly - the enlargement of both the liver and the spleen.Occasionally central nervous system lesions occur: cerebral granulomatous disease may be caused by ectopic S. japonicum eggs in the brain, and granulomatous lesions around ectopic eggs in the spinal cord from S. mansoni and S. haematobium infections may result in a transverse myelitis with flaccid paraplegia.Continuing infection may cause granulomatous reactions and fibrosis in the affected organs, which may result in manifestations that include:Colonic polyposis with bloody diarrhea (Schistosoma mansoni mostly);Portal hypertension with hematemesis and splenomegaly (S. mansoni, S. japonicum);Cystitis and ureteritis (S. haematobium) with hematuria, which can progress to bladder cancer;Pulmonary hypertension (S. mansoni, S. japonicum, more rarely S. haematobium);Glomerulonephritis; and central nervous system lesions.Bladder Cancer diagnosis and mortality are generally elevated in affected areas.
    qwertyuiop123 453 Replies
    • November 15, 2008
    • 00:00 AM
    • 0
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  • What is the point of presenting the poor guy with an enormous list of diseases he may or may not have contracted in Gambia ? If they have no relation to his symptoms you are just causing further worry and distress.
    gungwane 62 Replies
    • November 15, 2008
    • 08:31 AM
    • 0
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  • I have another possible suggestion. There is an amoeba called entamoeba histolytica which your brother could have picked up in Gambia. It can form cysts or absysses in the liver. Onset of invasive disease is gradual (over 1-3 weeks). Typicallly presents with abdominal pain, tenderness and bloody stool. If the disease is misdiagnosed as IBD and treated with steroids, there is a marked worstening of symptoms. It is possible to test the blood of the infected person for antibodies to the amoeba which would be a strong postitve point for the diagnosis. Otherwise stools samples can be taken but they must be done properly by someone who knows how, and at least three stools samples must be taken and kept warm before processing at the lab.
    gungwane 62 Replies
    • November 15, 2008
    • 11:23 AM
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  • Thanks Gungwane and Gwertyuiop123 for yor suggestions. Some of them sound quite scary but definately worth looking into. I will do some reading on the illnesses you have both mentioned . My brother is yet again in hospital today and seems to be going through a bad spell as he is in every second day just now. He spoke to his g.p. yesterday and asked about T.B. His g.p. is going to contact my brothers consultant and ask that he be tested. So thanks you for your help.
    Anonymous 42,789 Replies
    • November 15, 2008
    • 01:30 PM
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  • Has your brother been tested for porphyria? Porphyria may cause abdbominal pain as well as elevation of leukocyte count. In addition, frequent use of morphine for minor problems may also cause stomach pain (it is so called narcotic bowel syndrome).yours very trulyfred323@hushmail.com
    Anonymous 42,789 Replies
    • November 15, 2008
    • 09:31 PM
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  • Yes porphyria would cause the abdo pain and raised white blood cells but it doesn't explain the night sweats, also porphyria usually presents in childhood.
    gungwane 62 Replies
    • November 16, 2008
    • 06:43 AM
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  • Yes they have tested for porphyria. I have never heard of narcotic bowel syndrome. My brother has always been concerned about the use of morphine, his doctor told him there was no effective alternative as they had tried milder drugs in the past with no result. He usually takes about 20mg of morphine before the pain subsides. Does that sound like alot?
    Anonymous 42,789 Replies
    • November 16, 2008
    • 09:54 AM
    • 0
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  • My brother is 38 years old and has been unwell for six years during which time his illness has got worse and it is now at a cronic stage and effects every aspect of his life. At the begining he would be admitted to hospital for severe vomitting and abdominal pain 2-3 times a year. In between admissions he would have night sweats but be feel o.k during the day. The illness has progressed and he now has constant nausea on a daily basis despite taking the maximum dose of ondanderstron. In the past year he has had over 70 hospital admissions where he recieves i.v ondanderstron and morphine. On the days he requires hospital admission he usually begins to feel more unwell after a bowel movement. previously his bowel movements were loose but due to the amount of medication he takes he is frequently constipated. I have taken him to hospital on many occasions and the best way I can describe his presentation is to say it is like being with someone who is in labour as he is often very distressed with the pain. Over the years he has had many tests e.g scans, endoscopy, barium meal, H.I.V test, lead poisoning test. Nothing has given any clues to his illness. In the earlier days medics felt his illness was conected to his pancreas but they no longer think this. The only thing i am aware of is that he usually has raised white blood cells on hospital admissions. We feel lost and helpless as his consultant has said there are no other investigations to be done. Surely there has to be a reason for his constant ill health? They have stopped checking his bloods in hospital now as they feel there is no point. They concentrate on dealing with the acute admissions and patch him up, only to send him home and wait for his next admission. ( which on occasions has been less than 24 hours) We are determind to find the cause and I am constantly searching for information that may lead to a diagnosis. He was given the diagnosis of cyclic vomitng in the past but when he disscused his symptoms with a doctor who deals with this disorder, he felt that his symptoms do not fit this diagnosis. Prior to becoming unwell he was on holiday in Gambia and we have wondered if there is a conection to this. We would be so greatful if anyone could help us. Thank you for taking the time to read this.Biddy.Did you ever find out what was wrong with your brother?
    hme1676 1 Replies
    • January 22, 2013
    • 01:02 AM
    • 0
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  • Unfortunatly my brother continues to suffer the same symptoms and has frequent visits to hospital. His hospital management plan is working better for him and they try to get him in and out within 6hours. His episodes continue to cause him a lot of distress and he can still have several trips to hospital a week. He continues to use alot of morphine, lorazapam and ondandestron to manage his symptoms. They have told him that they are not going to do any more investigations as they feel they have explored all the avenues they can. I would love his situation to change and for him to get his old life back. Any suggestions ?
    Anonymous 42,789 Replies
    • February 27, 2013
    • 09:16 PM
    • 0
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  • It's five years later, but I figured it is worth writing in case your brother has not gotten better.It sounds to me like he has schistosomiasis (or some crazy tropical disease). He should definitely get tested for all that he may have contracted in Africa (that's where I contracted mine).My reasoning: I had it for over 13 years (with many similar symptoms–felt like I was being knifed to death on a daily basis) before I was finally diagnosed. Had been to over 60 doctors, multiple operations, many, many hospital stays and tests and no one could tell me what was wrong. After black outs started to become a daily habit and I was convinced I had a tapeworm, drs finally gave me an MRI and CT which should hundreds of eggs lodged in various organs and all over my GI tract. I went to a doctor thinking I had neurocysticercosis, but she took one look at me and said it was schisto. A blood test to the CDC revealed antibodies which meant I currently or at one time had an infection.Took praziquantel, thought I was better, and am still fighting it another year later.My advice: Find a very, very good infectious disease doctor. Have blood drawn and sent to the CDC - no other blood testing in the US is even remotely accurate. Stool samples will most likely show no eggs even if he does have them as it is very difficult for persons who do not see this disease on a daily basis to find them in a stain. No matter what the tests say, fight to get the praziquantel and make sure you take it three separate times over a period of 9 months. (First treatment over 3 days, second treatment 3 months later, third 6 months later.) According to a 2010 Israeli study, this has proven to be the most effective strategy for eliminating the burden in tourists who have contracted the disease. I haven't met one doctor who really knew anything about this disease. You will have to read many, many journal articles and educate yourself. I contracted my disease in water that contained a waterfall – the theory up until the last year had been that you could only contract it in still waters. If you have a chance, head to the Bernhard Nocht Institute in Hamburg, Germany. They have developed the only way to test if the worms are still in your system by checking the volume of the worm corpses in your blood to see if they increase or decrease overtime.BTW Schisto is known to live in your system for 30 years.Good luck and stay sane. It won't be easy to find a diagnosis in the western world if you picked up a tropical disease.
    HungryBetty 2 Replies Flag this Response
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