Discussions By Condition: I cannot get a diagnosis.

Everyone agrees he's sick...no one knows why

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: twoholyhearts
  • September 28, 2008
  • 09:28 PM

Normally very healthy, very high energy, extreme go-getter 49 year old husband sick since January 2008. Started with cold/flu that he never completely recovered from. Had relapse in March with deep racking dry cough, extreme fatigue, difficulty breathing after walking just a few steps and ended up on oxygen. Pulmonologist said it was a cardiac issue and they found him in atrial fibrillation. Corrected by medicine but still no recover. In July he was diagnosised with mono. Still has dry cough and now extreme hoarseness plus now has profuse sweating spells. Emergency room visit this week shows no mono but swollen tonsil so given Z-pak. White cell counts 9.6 (normal). The next day - another emergency room shows white cell count 0ver 19,000 even though he was on antibiotics. He is EXTREMELY fatigued and rarely has the energy to leave the house although he was involved with dozens of activities. He is NOT depressed - just frustrated with the lack of energy and lack of diagnosis. Thyroid has been high then low now slightly elevated but no treatment - just being wtched.

He saw a show about misdiagnosis and found similar symptoms in a woman with Non-Hodgkins Lymphoma that took her 3 years to get diagnosed. Any help would be greatly appreciated.

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  • Non-Hodgkins would certainly be among the differential diagnoses for your husband. I would ask whether he has any positive lymph nodes and whether a CT of the thymus gland has been performed? Lymph nodes that are firm, non-tender and 1 inch in diameter or so (bulky disease) tend to be highly characteristic of hodgkins and swelling of the thymus gland can exert pressure on the trachea and the heart to the extent that problems develop. In particular, and although more rare, if the superior vena cava is compressed rather than displaced, it can produce swelling of the head and arms with symptoms of profuse coughing, fatigue and shortness of breath that constitute a medical emergency. Has he experienced any type of pruritic rash that has appeared anywhere, most particularly the legs and if so, does he find the itching to be persistent and run deep in the tissues instead of on the surface? Any abdominal swelling? When you say that he suffered a relapse in March, to what extent did he recover between January and March? I would suggest a full lab study of his B cell fractionation and if lymph nodes are positive anywhere, a fine-needle biopsy. This is where the problem will be found if we're looking at Hodgkins. A presentation like this, by the way, would not suggest clinical depression. Exposure to any of the following would increase the risk factors for NHL; human T-lymphotrophic virus type IEpstein-Barr virus Helicobacter pylori, a bacteria that may infect the gastrointestinal tract and can cause lymphomas of the stomach;Even the HIV virus can be implicated in the onset of NHL. There are a number of patients whose prodrome consisted of flu-like symptoms that persisted to one extent or another and depending upon the responses to my questions, this may or may not demonstrate NHL. It is often confused with the symptoms of mononucleosis, however, and other disorders can demonstrate the same sort of presentation. Also be aware that about 80% of persons with Hodgkins or non-Hodgkins present with no classic symptoms at all. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • September 28, 2008
    • 10:28 PM
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  • I so appreciate your reply. Thank you for taking the time. My husband spent 20 years in the military and has the incredible disclipine and dedication to everything with the warrior spirit to go with it. He has worked under ANY conditions imaginable and for any length of time. He doesn't have an iota of I QUIT attitude. He had an uper GI in March to determine what was causing the persistent cough. Everything was clear. After Pulmonary was ruled out and Cardiac addressed the never-had-before atrial fibrillation in June he was sent to an ENT last month. CAT scan from ears to top of chest was done and a scope down his nose. Scope found right vocal cord is paralyzed. We go tomorrow for CAT scan results and plan of action for vocal cord. ENT Dr. says the fatigue and ongoing health issues are out of his realm of expertise. He does have a deep dry cough still that sounds like the whooping cough children get although the cough is not constant anymore. He has never smoked and quit drinking 24 years ago. He had Hepatitis C 25 yers ago and was VERY, VERY sick for months. He has had no relapses from that and blood tests today show traces only. Recovering from Jan-Mar entailed being able to work most days for 8 hours instead of just a few days at 8 hours. No stamina and extreme fatigue(We own our own business so he usually NEVER takes any time off but now has only put in about 6 weeks of full-time work since January, the rest being no work or a few hours daily.) He has always had a ruddy complexion but now looks fire engine red most of the time. Has had uncontrollable itching of the legs but no rash. Although he does not run a fever he frequently breaks out in cold sweats and sweats profusely, having to change shirts, underwear etc. He has been put on prednisone several times to try and boost his energy level. First ER visit this week right tonsil enlarged but not infected, spot mono test was negative, heart tests negative, white cell count 9.6, given 125 mg of IV prednisone, prescription for Z-pak (he started that night) and released. Latest Epstein-Barr test results should be back tomorrow. Next day, different ER white cell count over 19,000 with no fever, all other bloodwork fine, heart checked out fine, CT of chest, abdomin & pelvis was fine. Dr. says he is definitely sick and try another primary care doctor that will take a better look at the big picture to get him diagnosed. I truly appreciate the information and will print to take with us tomorrow to the ENT.
    twoholyhearts 1 Replies
    • September 29, 2008
    • 02:25 AM
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