Discussions By Condition: I cannot get a diagnosis.

Churg-Strauss Disease in Question

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: helplesswife
  • July 11, 2010
  • 02:53 PM

Hi, I am actually needing a better explanation then what I am getting at the VA Hospital in North Chicago about my husbands condition. Hes thirty years old, and was in perfect health when he was in the military. He was honorably discharged in 2005. He had his nose reshaped as a child for his nose was S shaped and was causing nose bleeds. This whole problem started about three years ago when he started having a chronic cough. The doctors told him to just take over the counter cough medicine to make it go away. Two years went by of trying various cough medicines, and eventually a doctor diagnosed it as asthma for he started wheezing in a breathe. One year ago he started having trouble walking with his ankles flaring up in pain got that diagnosed as tendinitis and he needs a cane to walk. A few months after this started he started having a pain in his upper left abdomen and they determined it was Eosiniphilia Esophagus (EE), and dilated his esophagus. The pain went away for about a month and came back with a vengeance, he was dilated once more but the pain was back within the week. His blood since has had really high eosinophil counts but not high enough to diagnose it as hypereosiniphila syndrome (HES). Wednesday his right leg started having tremors, so I took him back to the VA hospital to get it checked out they admitted him and started running tests for HES. Unfortunately the hospital has set hours to run tests, and I have caught them in several lies. They tell us his tests are all normal and then rerun some of them on emergency status, then later we find out they found something out of normal but wont tell me what it was. Hes had many other tests done that I probably never know the results to no matter how many times I ask them. Being the weekend he has no tests scheduled, and is in waiting for Monday when he has a EMG test to rule out neuropathy. Their is one doctor who believes he has Churg-Strauss Disease, but the other doctors who are working his case don't believe him, and getting straight answers from them is not working. One doctor told him that hes just stressed out and has allergies. I am to the point I don't know who to turn to anymore, I really believe these are linked, but not sure how. Today he started having chest pains, and they claim the EKG is normal. We two young girls, and so I am not allowed in the hospital to take care of him. When I call to find out test results I am either hung up on, or put on hold till the system hangs up on me. Being ignored like this is making me feel helpless, and all I want is a straight answer from someone.

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6 Replies:

  • Unfortunately the hospital has set hours to run tests, and I have caught them in several lies. They tell us his tests are all normal and then rerun some of them on emergency status, then later we find out they found something out of normal but wont tell me what it was. Hes had many other tests done that I probably never know the results to no matter how many times I ask them. I dont know how your country works but in mine there is a "freedom of information act" in which forces doctors, hospitals to give you copy of the whole medical file if you request it in writing (often thou asking is enough). Doctors dont like it, but by law, they have to. I strongly suggest for your husband to apply for a copy of his hospital notes and also a copy from his doctors surgery. Often there is a small overall change to requests for hospital notes, tests etc but i personally think it's worth it. Try thou just asking for copies of his test results first, I think thou he would have to be the one to ask rather than yourself. If you try verbally asking the doctors for copies (instead of filling out their formal forms requesting) and if doctor said no.. you can also get the hospital social worker involved to help you get whatever you are after. Copy of test results are your husbands right to see and have.
    taniaaust1 2267 Replies Flag this Response
  • :D Thank you so much, I will look into that now and start questioning them about getting these documents. I wound up getting him discharged from the hospital yesterday because the attending, and nurses over the weekends and nights were not listening to him. He had pain shooting in his joints and they told him to suck it up for he was already on a lot of pain medicine. They didn't even bother to write it down, or say they will look into what they can do for him. The tests they haven't run yet are now scheduled for outpatient.
    helplesswife 2 Replies Flag this Response
  • We did finally get the medical records from the VA hospital, and the rheumotologist suggests that hes being malingering about this. Just the thought of that has pushed me over the edge of wanting to get a lawyer. Sadly we still have no clear diagnoses because of people like her.
    helplesswife 2 Replies
    • August 19, 2010
    • 03:22 PM
    • 0
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  • sorry to hear that the doctors are being such idiots. This is a very common thing which happens to people when the hospital cant work out what is wrong (much more commonly happens that females are accused of this). Im glad to hear you got him out of there and also got his medical file so you know now what they were thinking and now can seek out another doctor. Let us know if you find out what is wrong.. best luck
    taniaaust1 2267 Replies
    • August 21, 2010
    • 04:17 PM
    • 0
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  • Hi there.I just came across your question and situation. I'm not even sure that you'll even see my response but...I was diagnosed with Churg Strauss Syndrome back in June of 2008, after two separate hospital stays I was finally diagnosed with this disease after a Kidney biopsy.I've been living with CSS for a little more than two years now. I can tell you that CSS is one of the rarest of vascular conditions and most doctors are really not very familiar with the condition. I blog about my life with CSS over at my blog, Lew Newmark: My Domestic Life at www.mlcss.com. You can find some informative articles there and you can always drop me a line with any question that you may have...Lew Newmark living with the disease for two plus years now!
    Anonymous 42789 Replies
    • August 26, 2010
    • 02:04 AM
    • 0
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  • :D Thank you so much, I will look into that now and start questioning them about getting these documents. I wound up getting him discharged from the hospital yesterday because the attending, and nurses over the weekends and nights were not listening to him. He had pain shooting in his joints and they told him to suck it up for he was already on a lot of pain medicine. They didn't even bother to write it down, or say they will look into what they can do for him. The tests they haven't run yet are now scheduled for outpatient.I am a 34 year old male who has been in the army...I was medicaly discharged because of a sudden onset of asthma at 24 and rhinitis. From then I developed chest pains with a normal ekg also..pain in all extremities..arthritis..migraines..severe tremors/seizure in whole body..rectal bleeding..blood in urine..high eosinophil count..diarrhea for over a year which the va took out my gall bladder saying that was the issue and then dissected it and said it was fine..swelling in hands and feet..naseua..night sweats..high blood pressure..sleeplessness..and the list goes on and on. So far I have been told by the va that im depressed, its psychological and half of the records of my trips to the emergency room and doctors are not in my files once I requested them..they sent me to a shrink who said I wasnt depressed and showed me notes from dr I was not shown saying they think I have polymyalgia etc....I was told to try and up my disability rate from 40 percent to higher and when I did they denied it because they lost my medical records...I am a father of five and now cannot work...I am confined to a wheel chair and can barely speak as my speech has now been affected also...I have asked to be checked for churg-strauss syndrome and yet the dr's (even regular dr outside va) refuse to check for it. They want to treat me per symptom....Withouth diagnoses of course I cannot even get disability through the government...I know what your going through and I wish I could find someone with answers
    Anonymous 42789 Replies Flag this Response
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