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No one knows!

so I’ve had asthma since I was younger, and since about last November I have had trouble breathing with minimal relief. I have done prednisone, singulair, symbicort, spireva, xopenex, trelegy, akbuterol, proton pump inhibitors, I have had larygoscope, chest x rays, ct scan of chest and throat, bronchoscope and many dr visits all to have everything looks pretty good …. no matter what I always have a wheeze in my throat and also sometimes in my chest but only on the left side. The shortness of breath comes and goes but feels more on than off does anyone have ANY ideas here? It’s getting frustrating to have all this stuff done with satisfactory results, all the breathing studies come back fine as well! Help! 

 

Thanks for listening 

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Comments 17

  • LK

    Hi Kyle,

    Sorry you have been struggling for so long with no definitive diagnosis.  That is hard.

    Like you, my numbers and every other test comes back with flying colors.  Only test that didn't was when my ENT said my reflux was still affecting my vocal chords.  Added another reflux med and that helped.  

    Have you ever had an injury on your left side that could be acting up now and aggravating that side more?  Just a thought.  

    Have your doctors given any reason for your symptoms?

  • kyle boeckmann

    I can not think of any injuries, I also had a barium swallow and it was all okay we have ruled out quite a bit but not gotten any closer :/, I am wondering about allergies maybe as I was quite allergic to dust but I’m not sure if the symptoms could be so permanent as it seems to be.

  • Shea

    This came to my mind:

    Cardiac asthma is not a form of asthma. It's a type of coughing orwheezing that occurs with left heartfailure. Depending on how severe your symptoms are, this wheezing can be a medical emergency. … The latter causes signs and symptoms — such as shortness of breath, coughing andwheezing — that may mimic asthma.

  • Emelina

    Howdy, here are a couple questions: 

    – what area of the country do you live in? If you’re struggling, National Jewish health in Denver has a great asthma and comprehensive evaluation program. I went there and they were very thorough. If the idea of spending 7-10 days in Denver is daunting, you could go for an asthma clinic visit and see what they think.

    – are you cared for by a pulmonologist and allergist? They might have some insights 

    – have you had an echocardiogram of your heart? Sometimes cardiac issues can also masquerade as or complicate asthma

    – have you been evaluated for vocal cord dysfunction?

    – have your doctors considered tracheobronchomalacia? 

    – have you had recent inflammatory marker evaluation to better characterize your asthma (IgE, serum eosinophils, allergy testing)

    good luck! 

    Best, em

  • Shea

    I have asthma AND a heart condition and it is really hard for me to know which is which sometimes… But if you havent done a cardiac work-up… It might rule that out.

  • kmcnamara68

    Hey Kyle. I just recently joined this site. I too have been struggling on and off (mostly on) for last almost 2 years. In fact, last year I was diagnosed with COPD. However, during recent hospital visit, pulmonologist told me he does not think so. A recent follow up with allergy/immunologist supported what he said. I showed allergist an allergy blood panel and IgE test I had done a little over a year ago and he assured me my problems have been from severe allergies. He said that is what has been causing my breathing and bad PFT results. Both he and pulmonologist said that at times when asthma is not being controlled well, it can show as COPD on spirometry. Anyway, I had allergy shots over 30 years ago and they did help. So, I am going back in next week for allergy testing again and then will begin getting shots again. Long story short, it definitely could be your allergies. See an asthma/allergy specialist if you can and consult with him/her on possible testing and treatment. I am hoping to see improvement with treatment myself. Best of luck to you as well.

  • kyle boeckmann
    kmcnamara68 posted:

    Hey Kyle. I just recently joined this site. I too have been struggling on and off (mostly on) for last almost 2 years. In fact, last year I was diagnosed with COPD. However, during recent hospital visit, pulmonologist told me he does not think so. A recent follow up with allergy/immunologist supported what he said. I showed allergist an allergy blood panel and IgE test I had done a little over a year ago and he assured me my problems have been from severe allergies. He said that is what has been causing my breathing and bad PFT results. Both he and pulmonologist said that at times when asthma is not being controlled well, it can show as COPD on spirometry. Anyway, I had allergy shots over 30 years ago and they did help. So, I am going back in next week for allergy testing again and then will begin getting shots again. Long story short, it definitely could be your allergies. See an asthma/allergy specialist if you can and consult with him/her on possible testing and treatment. I am hoping to see improvement with treatment myself. Best of luck to you as well.

    Thanks, I do plan on seeing an allergy specialist soon!

  • kyle boeckmann
    kyle boeckmann posted:
    kmcnamara68 posted:

    Hey Kyle. I just recently joined this site. I too have been struggling on and off (mostly on) for last almost 2 years. In fact, last year I was diagnosed with COPD. However, during recent hospital visit, pulmonologist told me he does not think so. A recent follow up with allergy/immunologist supported what he said. I showed allergist an allergy blood panel and IgE test I had done a little over a year ago and he assured me my problems have been from severe allergies. He said that is what has been causing my breathing and bad PFT results. Both he and pulmonologist said that at times when asthma is not being controlled well, it can show as COPD on spirometry. Anyway, I had allergy shots over 30 years ago and they did help. So, I am going back in next week for allergy testing again and then will begin getting shots again. Long story short, it definitely could be your allergies. See an asthma/allergy specialist if you can and consult with him/her on possible testing and treatment. I am hoping to see improvement with treatment myself. Best of luck to you as well.

    Thanks, I do plan on seeing an allergy specialist soon!

    Also good luck with your tests, I hope it all goes well for you!

  • K8sMom2002

    Kyle, your situation sounds so frustrating! I'm so glad you've got a doc who's willing to look and hunt and dig and that you'll also be seeing an allergist.

    Everyone has some really good questions for you to discuss with your doctor.

    A couple of other questions for me to better understand your situation:

    • What happened in November to set this off? 
    • When you get short of breath and you feel that "wheeze" in your left side, is it always in about the same spot? Where exactly?

    Being able to describe your symptoms in detail may help your doctor understand exactly what's going on. People with asthma can have extra mucus that can block airways, and then that can set off the rest of your lungs. 

  • Shea

    For me, my heart danage was caused by allergic eosinophils choking my heart and keading to a heart attack at age 26, and at that time I was duagnosed with churg-strauss syndrome. Since then, my blood flow measured on cardiac stress test (like on a treadmill then taking pictures of the heart to measure blood flow) shows the blood isn't flowing and anything that us messing with blood flow to the heart– whether it be from blocked arteries, valve problems, past heart damage, or some type of rare allergic inflammation tgat affects blood bessels and organ tissues (as in my case)– but if it affects blood flow then its bad and could cause wheezing.

    A little excerpt from online:

    "Wheezing in cardiac asthma is not due to narrowing of the airways and inflammation, but due to fluid in the lungs. When the heart pump is not working correctly, fluid tends to back up into the lungs. The fluid in the lungs is what leads to wheezing in the lungs.

     Heart failure is not really a specific condition, but a conglomeration of symptoms. In other words, heart failure has a cause and your doctor must determine the cause in order to provide you the best treatment. Sometimes heart failure results from narrowing of the arteries that provide blood supply to the heart. Other times high blood pressure over many years leads to damage of the heart and the poor pump function. Over times these conditions lead to the heart becoming weak, stiff, or both.
     
    Sometimes the poor heart function is not due to poor blood flow, often called cardiomyopathy. Viral infections, drug abuse, and alcohol abuse can all lead to the damaged heart muscle and the symptoms of congestive heart failure."
     
    So getting a cardiac workup could identify many of those causes. 
  • Amber Says Shine

    Hi Kyle!  So much empathy for your situation! My doc (an alleegist) had tried me on multiple allergy and asthma meds, which just sort of worked okay but didn't significantly improve my wheezing or shortness of breath.Similar to you, a lot of my wheezing/rattling seemed to be in my right lung and I have a pattern of holding stress in my right ribs/shoulder/back. We were both so frustrated and confused why nothing was helping! In November 2018, he prescribed me a one year course of add-on azithromycin (antibiotic). It's a newer treatment for persistent asthma that is steroid resistant (I got prednisone shots and several rounds of the oral "burst" but couldn't maintain any benefits).  His decision was based on a 2017 research article about this approach. Even the pharmacist was shocked at how long I'd be taking it 😂  It has worked wonders!! I have no idea if that will work for you, but I guess what I'm saying is: keep trying different things! So much of finding the right treatment seems to be trial and error, until you hit the jackpot! Sending good vibes your way 💜

  • kyle boeckmann

    Thanks for asking I actually just posted this in the allergy area, I had an allergy test today and was severe for dust mites 

     

    i have been since September trying to figure out my breathing problems, I have been to regular dr, gastro l, pulmonary and ENT. I have had x rays, ct scans, breathing tests, barium swallow and others. I have a constant wheeze in my throat with chest tightness and chest wheeze and sometime feeling of hard to breathe. I have tried all different inhalers with no luck and montelikast as well. Today I was allergy tested and tested severe to dust mites all kinds and dust, has anyone experienced seemingly chronic breathing issues because of an allergy? I do not get the typical itchy eyes, sneezing, runny nose at all but I do have post nasal drip. Is it possible to have literal non stop issues if untreated? I was just prescribed olaoatadine, mometasine, cetrizine and montelukast. How long would it take for one to feel better if allergies is the issue? Feeling kind of lost, thanks for any help! 

  • K8sMom2002
    kyle boeckmann posted:

    I was just prescribed olaoatadine, mometasine, cetrizine and montelukast. How long would it take for one to feel better if allergies is the issue? Feeling kind of lost, thanks for any help! 

    Kyle, that's a great question for your allergist — or your pharmacist. I like to ask my doc, "Okay, when should I see improvement from this new med or new change? What do I do if I haven't seen that improvement?"

    And yes, allergies can cause different sorts of reactions in various people. AAFA has a great resource on  that may help you figure out how to roll up the welcome mat and make sure they don't find your home hospitable!