Chronic respitory problems without any relief?

Discussion in 'Coping and Compassion' started by Huff, Jan 19, 2011.

  1. Huff

    Huff DIS Veteran

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    It's been at least 25 years since I took an effortless breath of air. I've been diagnosed with Asthma by some or COPD by others. Over the years I've taken just about every inhaler, steroids and other treatments without even the slightest relief.

    Every few years I decide to try again, find a new pulmonologist and hope something new has been found. Each time the Dr. has be do a pulmonary function test then hands me a prescription for some inhaler or other drug. I try them but nothing helps at all. Also tried many years of allergy injections including Xolair which was VERY costly.

    Only thing Dr's are puzzled by is that on my blood tests my ASA score is extremely high. That in itself doesn't mean much except that 90% of those with immune disorders, diseases such as Lupus etc. have high ASA scores. Tests for such diseases turn up negative. Dr. thinks I have some sort of immune issue but can't find it.

    Breathing trouble is 24/7. I do not have attacks per se. Its all day/night. I'm at a loss as to where to turn now and currently not seeing a Dr. as I just give up!

    BUT....we are headed to WDW in June as that always lifts my spirits. As we have no children of my own we take a few underpriviledged kids with us. Seeing them smile and have fun takes a ton of my pain away. Its the best therapy yet!
     
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  3. quasar4legs

    quasar4legs DIS Veteran

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    Gosh, it must be so frustrating not being able to get an accurate diagnosis or treatment for you breathing problems.:hug:

    Are you near a big teaching hospital that has a specialist lung unit. Maybe they could help.:confused3

    Your trip to WDW sounds wonderful and how kind of you to include children that need a little magic in their lives.:flower3:

    Please don't give up, there must be someone out there that can help. Maybe you could contact a lung support group near you that might be able to suggest a doctor or clinic.

    I am sorry you are dealing with this health issue and am sending you a BIG Koala cuddle:hug::hug:

    Quasar
     
  4. Christine

    Christine Would love to be able to sit on

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    What type of doctor have you seen to evaluate the high ASA. Sometimes a rheumatologist is the way to go with autoimmune disorders.

    Have they tested your for sarcoidosis, which can affect the lungs and is autoimmune.
     
  5. Huff

    Huff DIS Veteran

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    I did see a rhumatologist but am not sure exactly what he tested for. I do know Lupus was and showed negative.
     
  6. Earstou

    Earstou <font color=336699>The Tag Fairy sends you pixie d

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    After years of problems with no medications helping, I was just recently diagnosed with vocal cord dysfunction. The vocal cords should open to breathe and close for talking, but mine close for breathing. (I thought the doctor was nuts when he first told me this!!!)
    I had my vocal cords scoped to confirm it.
    So possibly check into vocal cord dysfunction.
     
  7. lovemygoofy

    lovemygoofy DIS Veteran

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    If I didn't know better I'd think you were my mama typing out that message.

    I can't remember a day where she hasn't had trouble breathing. After years of testing and medicine and this that and the other..one really difficult test of FORCING air down her lungs while they watched her lunds expand and contract when they FORCED the air out showed that my mom's lungs or the little tubes connected to the lungs never fully developed. She was born early with pneumonia and was in an oxygen tent for 6 weeks with her twin brother. Interesting enough he also has the same problem.

    I'm certainly no doctor but I do have asthma and for a long time I was not able to breathe well for a while and it was found that I had acid refulx. It was not going up but down into my lungs causing constant coughing and breathing issues. I know take meds for that and after having my tonsils out I breathe better without constant infections of bronchitis and sinus.

    I hope you feel better or sometime find the answer. Do you have a good teaching hospital near you? That was what my mother finally did. She checked in and said she wasn't leaving until they figured something out because she was tired of not being able to breathe.
     
  8. mommasita

    mommasita DIS VETERAN Moderator

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    This must be very trying. You have received some excellent advice here already. I offer giant :hug:, and hopefully things can take a turn for you.
     
  9. Huff

    Huff DIS Veteran

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    I did have one Dr. do just that and confirm my vocal chords are inflamed. Trouble is the only cure for that per my Dr. is speach therapy which did absolutely nothing. I feel thats because whatever the reason for them being inflamed is not addressed. Have you found anything that worked to help you breath better? My lung capacity and flow rates average around 40% of expected with occasional days where I may hit 50% but never better.
     
  10. gillep

    gillep DIS Veteran

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    Wow, this sounds exactly like my mother in law. She has experienced many of the same lung issues for at least 10 years, she has been tested for lupus multiple times and although most tests have come back negative she has also had some inconclusive results as well. After about two years of being hospitalized about once to twice a month due to breathing issues (sometimes followed by complications due to being in the hospital environment) her and her doctor decided that they needed to take action to try and get this under control as it was going to kill her one way or another with all of the hospitalizations. They decided to put her on a lupus medication on a trial basis to determine if it would have any impact on her symptoms. She has been on the medication about a year now and we have all seen drastic improvements. She has only been hospitalized twice in the past year which is a great improvement to the ~15 times the previous year and she looks and feels much better. This was obviously a shot in the dark and pretty drastic considering the potential side effects of the drugs but it has really given her a life back. :grouphug: for you and hopefully you can find some answers.
     

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