Discussions By Condition: I cannot get a diagnosis.

We cannot get a diagnosis after 11 weeks in the hospital

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: g16914
  • January 11, 2010
  • 05:48 PM

Posting this message because not sure where and what to do next.
My brother(34) was hospitalized last June with swollen belly and had hard time breathing. After getting 2 back to back tests done with contrast, it turned out he had a clot in his lung. While getting treated for that...he had renal failure due to contrast testing twice within 3 days. He also had a prettey severe ulceritis coilitis flare up at that time. He has had UC for 10yrs and Type 2 diabetes for 8 years. He was at 2 different hospitals for 9 weeks total and they were not able to give any diagnosis...gave him 60mg prednisone and sent him home. Slowly he got better and they wheened him off prednisone down to 5mg in Dec. He had flu like symptoms in Dec 2nd week...and he self treated with Advil and went on business travel. When he returned...got a z-pack for his ongoing flu symptoms..still not better and he started to retain fluid in his abdomen and legs as back in June. Was hospitalized on Christmas day...and every test was re-ran and no diagnosis. I took him to Mayo clinic last week and they ran mutliple tests and bone marrow biopsy and lymph node biopsy and all came back negative for cancer. Same tests were ran at the last time he was hospitalized. All 3 hospitals since last June were assuming Lymphoma but all biopsy's come back negative. He's still at mayo and his creatinin leve is 1.2...but potassium continues to go from 4.5-6.9 from morning to night time. His BP is a high also. He's been tested by Infectious diseases also and all negative. Mayo does want to discharge him this week with no diagnosis. Need urgent help. Has anyone seen case like this before?

Dr's are saying that they sometimes cannot diagnose and patients go home and the issue goes away on its own. That answer is not good enough for us. They are also suggesting putting him in high dosage of Prednisone or similar to fix the underlying issue..which they cannot diagnose. One cannot live their life being on steroids, can they?

Please help with any suggestions or questions/tests I should ask the Dr.'s to do further. His UC is under good control so that is not of any concern right now.

Thanks

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  • Posting this message because not sure where and what to do next. My brother(34) was hospitalized last June with swollen belly and had hard time breathing. After getting 2 back to back tests done with contrast, it turned out he had a clot in his lung. While getting treated for that...he had renal failure due to contrast testing twice within 3 days. He also had a prettey severe ulceritis coilitis flare up at that time. He has had UC for 10yrs and Type 2 diabetes for 8 years. He was at 2 different hospitals for 9 weeks total and they were not able to give any diagnosis...gave him 60mg prednisone and sent him home. Slowly he got better and they wheened him off prednisone down to 5mg in Dec. He had flu like symptoms in Dec 2nd week...and he self treated with Advil and went on business travel. When he returned...got a z-pack for his ongoing flu symptoms..still not better and he started to retain fluid in his abdomen and legs as back in June. Was hospitalized on Christmas day...and every test was re-ran and no diagnosis. I took him to Mayo clinic last week and they ran mutliple tests and bone marrow biopsy and lymph node biopsy and all came back negative for cancer. Same tests were ran at the last time he was hospitalized. All 3 hospitals since last June were assuming Lymphoma but all biopsy's come back negative. He's still at mayo and his creatinin leve is 1.2...but potassium continues to go from 4.5-6.9 from morning to night time. His BP is a high also. He's been tested by Infectious diseases also and all negative. Mayo does want to discharge him this week with no diagnosis. Need urgent help. Has anyone seen case like this before? Dr's are saying that they sometimes cannot diagnose and patients go home and the issue goes away on its own. That answer is not good enough for us. They are also suggesting putting him in high dosage of Prednisone or similar to fix the underlying issue..which they cannot diagnose. One cannot live their life being on steroids, can they? Please help with any suggestions or questions/tests I should ask the Dr.'s to do further. His UC is under good control so that is not of any concern right now. ThanksI'm a medical student in Europe.Since you mentioned the Mayo Clinic, then rest assured your brother is recieving good care hopefully! Since they have a excellent reputation.I'm sure they're trying to solve the problem.
    Anonymous 42789 Replies
    • January 14, 2010
    • 00:52 AM
    • 0
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  • I'm a medical student in Europe.Since you mentioned the Mayo Clinic, then rest assured your brother is recieving good care hopefully! Since they have a excellent reputation.I'm sure they're trying to solve the problem.I hope you get a resolution! We had no luck at mayo btw. I don't think they're doctors are any better than anywhere else, it's just convenient that everything is right there. They just love to shoot you up with radiation there. Has your brother had a 24 hour urine test for catecholamines? Usually theres an underlying reason for pulmonary embolism. Don't give up! Make them give you a diagnosis. How about rheumatology? Autoimmune disease?
    Anonymous 42789 Replies
    • January 16, 2010
    • 04:17 AM
    • 0
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  • I hope you get a resolution! We had no luck at mayo btw. I don't think they're doctors are any better than anywhere else, it's just convenient that everything is right there. They just love to shoot you up with radiation there. Has your brother had a 24 hour urine test for catecholamines? Usually theres an underlying reason for pulmonary embolism. Don't give up! Make them give you a diagnosis. How about rheumatology? Autoimmune disease? Yeah, they did the 24hr urine test when he was first admitted back in June of last year.Mayo discharged him last week without a diagnosis and referred him to a local hospital in our town. They've checked him for everything under the sun and all tests come back neg. Rheumatology, hematology, nephrology, GI, Oncology, etc..have all looked at him. he's home now but still has a lot of swellign on his abodomen, arms and legs. They are increasing steroid dossage but not helping. His potasium and creatinin levels are high also due to all the fluid in his abdomen/legs..etc.
    g16914 1 Replies
    • January 20, 2010
    • 05:49 PM
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