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Asthma diagnosis?

I need help with treatment and more so diagnosis. Seems it is misunderstood. I have triggers. Cold, smoke and humidity the worse. When I go into cold weather I can’t breathe. My oxygen goes to 70 and my heart rate goes to 200. It gets better when I enter room air. it gets better at em room with nebulizer treatment. Took a methaclorine challenge that was negative and told I do not have asthma. But still th Breo I was given has helped. Numerous times I almost lost control of the wheel driving, once my daughter took the wheel. I believe it is asthma of some type. I wheeze. I feel like an elephant is sitting on my chest. I feel like I am breathing through a straw. My lungs fill with fluid. I am fully ready to call it quits after 7 years with no diagnosis or help.

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Comments 48

  • Brenda Silvia-Torma

    Hello MPH, Welcome to AAFA's forums! I'm so glad you found us! In addition to the methaclorine test, did your doctor test you via ? During this test, people breathe into a mouthpiece that is connected to a device. You take a deep breath in and then exhale forcefully for as long as you can. The reason I ask is because spirometry is the recommended test to confirm asthma. 

    Is the doctor that you saw a board-certified allergist? And, did your methacholine challenge include cold air and humidity? 

    Here are some resources to review and share with your physician:

      • Includes a downloadable guide that you can complete and take with you to the doctors. It also includes other possible diagnoses, if asthma is 100% ruled out.

    Do you have any upcoming appointments? If you were not seen by a board-certified allergist, could you obtain a referral to see one in the coming weeks? 

    Hoping you get some relief (and answers!) soon!

    Brenda

  • Melissa G

    Wow, that has to be incredibly frustrating and scary! Brenda already gave you some very resourceful links. Have you sought out a second opinion? 

  • MPH

     

    To answer your questions.

    Board certified yes

    Challenge include cold and humidity no

    spirometry done and showed mild restrictive pattern

    Feno test done. I failed to perform test.

    Doctor cancelled all appointments.

    Told to stop Breo even though it worked mildly well. Later after I told them again what happens in the car, told to keep using Breo then.

     

    After everything I have been through I am ready to give up. One doctor once told me I need to expand my lungs and get exercise. One of my favorite things is hiking in the mountains. So I told a doctor all I need to do is exercise in those mountains and you no longer need to help me. I already passed out completely from cold weather walk of 10 minutes. I came to later with patchy  face and darken color lips. 

  • MPH

    I failed to tell you one other symptom. I have gone to multiple tests of my lungs when I have a trigger. Everytime it says I have pneumonia looking inflamed lungs. But I don’t have pneumonia. Given nebulizers and everytime after my breathing gets better almost within minutes. Prednisone works and nothing else has.

  • K8sMom2002

    MPH, this sounds incredibly frustrating! Welcome … I do hope we can offer you support and encouragement.

    I'm confused … when you say on the FeNo test you "failed to perform test," I don't understand … do you mean you couldn't do the test, or the test didn't show inflammation?

    AAFA's blog just posted more information about the  and its role in monitoring difficult to manage asthma.

    You shared that your O2 went down to 70? And your heart rate went up to 200? That is extremely worrisome! And did I understand correctly that the doc cancelled all your future appointments?

    Could you go back to your primary care physician and go over with your doc the "" material? And ask if you can be sent to another pulmonologist or allergist or, since your heart rate was 200, a cardiologist?

  • Brenda Silvia-Torma

    Hi MPH, when the doctor says you have pneumonia-looking lungs, but not pneumonia, have they done anything to treat your lungs so that you feel better?

    I'm frustrated for you!

    Since your doctor cancelled all follow up appointments, can you get a second opinion from another board certified allergist?

    Here are a couple of other resources about temperature and humidity and how they can trigger asthma or exercise-induced bronchospasm: 

    •  

    Cold air can definitely be a trigger for asthma and it's hard to get exercise if you're not breathing well.

    I encourage you to continue asking questions and searching for a doctor who will listen to you. Doctors may be experts in their field….but you are the expert on how you feel. 

    — Brenda

  • MPH

    Thanks for all the feedback. Answer questions.

    FENO test I was told I personally failed to do the test properly.

    Yes cancelled all appointment and told he was done with me. Told to go to many big cities including ones all the way across the nation.

    My heart rate is fine on all activities unless I come to a trigger. Once the trigger happens, my heart rate flys. I can’t breathe. seconds after walking slowly into cold weather. Or after coming out of a shower. Or smelling a fire. Or candles. Or alcohol wipes. Or perfume. Someone smoking. Or my wife cooking something while I sit.

    Prednisone works

    Nebulizer works.

    Breo marginally helpful.

     

  • K8sMom2002
    MPH posted:

    Thanks for all the feedback. Answer questions.

    FENO test I was told I personally failed to do the test properly.

    Yes cancelled all appointment and told he was done with me. Told to go to many big cities including ones all the way across the nation. 

    That had to be disheartening and frustrating.

    Which is the closest big city for you to go to? I would definitely start looking. 

    I will say that I opted for convenience and went with a local doctor for my daughter's allergist, but when we wound up being sent to a large teaching hospital, THAT's when we began getting answers. And after the first little while, when it seemed like we were making multiple trips back and forth, we got things stabilized and we now only have to go a couple of times a year. 

  • MPH

    Live in northeast. Went to a couple of major cities already. My symptoms sure sound like some type of asthma. I have been shown pictures of my lungs, the fibrosis from the inflammation is getting worse year over year. One lung is almost half black. While the rest shows spider type lines.

  • Deborah Bartlett
    MPH posted:

    I need help with treatment and more so diagnosis. Seems it is misunderstood. I have triggers. Cold, smoke and humidity the worse. When I go into cold weather I can’t breathe. My oxygen goes to 70 and my heart rate goes to 200. It gets better when I enter room air. it gets better at em room with nebulizer treatment. Took a methaclorine challenge that was negative and told I do not have asthma. But still th Breo I was given has helped. Numerous times I almost lost control of the wheel driving, once my daughter took the wheel. I believe it is asthma of some type. I wheeze. I feel like an elephant is sitting on my chest. I feel like I am breathing through a straw. My lungs fill with fluid. I am fully ready to call it quits after 7 years with no diagnosis or help.

    Hello MPH. Welcome! The elephant sitting on your chest is often described by COPD patients. I have asthma and COPD. Has a doctor given you a spirometry test to see if you may have COPD? I am asking you this because if you do have COPD, there ate medications that can help you with the symptoms. Take care! If you go out into the cold, cover your face! Try and avoid any triggers you may have. 

  • Brenda Silvia-Torma
    MPH posted:

    I have been shown pictures of my lungs, the fibrosis from the inflammation is getting worse year over year. One lung is almost half black. While the rest shows spider type lines.

    Hi MPH, Can you ask your primary care physician for a referral to a pulmonologist?  You can also ask your insurance company for a list of in-network pulmonologists. 

    Do the doctors who show you the pictures of your lungs explain what could be causing your one lung to become black?

    Brenda 

  • K8sMom2002
    MPH posted:

    Live in northeast. Went to a couple of major cities already. My symptoms sure sound like some type of asthma. I have been shown pictures of my lungs, the fibrosis from the inflammation is getting worse year over year. One lung is almost half black. While the rest shows spider type lines.

    If your current provider has exhausted his knowledge of how to help you, then I would definitely reach out to one of those hospitals the doctor mentioned. In the Northeast, you have access to , the #4 hospital in the nation for pulmonary conditions according to US News and World Report.

    I'm wondering if the other hospitals that were mentioned were National Jewish — the top pulmonary hospital in the country or the Cleveland Clinic. GigiGibson has recently made a trip out to National Jewish and gave us an . 

    I understand how exhausting it is to know that something is wrong but nothing turns up … and how you are weary at the thought of yet another exam room and yet another white coat. 

    But what I've found is that major teaching hospitals take a team approach — and they have armies of young, eager residents who have the latest, most-up-to-date information crammed in their heads … led by seasoned doctors who have years of experience.

    With your symptoms, and the fact that things are getting worse, I can see why you are worried and why you need answers.

  • MPH

    To Deborah, I have been told over and over my problem is the opposite of COPD. COPD is you cant get air out. My problem has always been I can’t get air in.

    Thanks for your help.

  • Deborah Bartlett

    Ok MPH. Just wanted to clarify that. I hope a doctor can give you the help you need soon. Take care and do the best you can. 

  • MPH

    Brenda, I asked why my lungs are getting worse to no answer. Just given more Prednisone to the point my A1C was 9.4, heart failure and kidney failure.

  • K8sMom2002

    Yikes, yikes, yikes! You really, really need to do something to figure things out. 

    And another thing … docs can take a look at the SAME test results and come up with different answers. That's what happened to us. 

    My daughter has a rare bleeding disorder as well as asthma and food allergies. We'd been going to a hem/onc who would only say, "Something's wrong. She's a mystery. Not sure what it is, but we'll just keep treating the symptoms." I kept pointing out two different suspicious test results, and he would just shrug and say that it didn't matter, that it didn't explain things.

    So we went for a second opinion. I took our test results and fully expected nothing new, or to be told we had to put her through a lot of new or repeat tests. The hem/onc there — older, wiser, and who had done a LOT of academic research — flipped through the test results, put his finger on the two suspicious results I'd been pointing out. "Well, there's your problem," he said. " This and this are problems with redundant systems. If one of these worked, it would be no problem. But because they are back-up systems, since both of them aren't working, she's got no back-up. We don't need to run any more tests because we know what's wrong." 

    The years we wasted … the pointless tests we kept putting her through … our first hem/onc kept repeating this one test over and over because he just knew that it would eventually show up as positive. And she never had that disorder after all. 

    So I think you are right to keep pushing.

    One thing I would suggest … sometimes you can reach out to doctors who specialize in rare disorders and ask if they would be willing to review your chart. We had doctors do that for our daughter … sometimes they were on the other side of the country, and yet they cheerfully reviewed records and recommended tests or medications or procedures.

    So could you talk to a doc that you trust and that you like and ask, "Okay, if you were in my shoes, what doc would you go to? Can you reach out to that doc first if it's a long way away and ask them to review my chart if it's worth it for me to go?"

  • Shea

    I really feel allergist/immunologist appointment could be helpful. You could get allergic triggers tested for there– I found allergists to be more helpful at avoiding triggers that cause my allergic asthma. For instance– if humidity is a trigger it might actually be molds that form higher in humid weather.

    I do not like the sound of your former pulmonologist at all. I have heard stories similar to that from others though, so I know there are both goid and bad dictors out there and some are better at treating straightforward things and some know how to use their brains and critical thinking to look beyond one test result for answers– so dont let one bad doctor harm you– keep fighting for your health!!!

  • IA-TXFisherman
    MPH posted:

    I need help with treatment and more so diagnosis. Seems it is misunderstood. I have triggers. Cold, smoke and humidity the worse. When I go into cold weather I can’t breathe. My oxygen goes to 70 and my heart rate goes to 200. It gets better when I enter room air. it gets better at em room with nebulizer treatment. Took a methaclorine challenge that was negative and told I do not have asthma. But still th Breo I was given has helped. Numerous times I almost lost control of the wheel driving, once my daughter took the wheel. I believe it is asthma of some type. I wheeze. I feel like an elephant is sitting on my chest. I feel like I am breathing through a straw. My lungs fill with fluid. I am fully ready to call it quits after 7 years with no diagnosis or help.

    Hi MPH. That sounds awful and my thoughts are with you. Obviously something is going on and they need to get to the bottom of it (sounds like asthma to me). As others have suggested seek out a second opinion and advocate for yourself. No one deserves to live like that and not receive proper care or answers. 

  • MPH

    Melissa thanks for your thoughts. I wish I could tell you more of my complete history. But it is fruitless. In a nutshell, I was misdiagnosed long ago. 8 years ago. Then I was misdiagnosed as to the reason I was acting desperate ( I had a heart block and this lung issue) I think the diagnoses was I am a very bad patient. A doctor in 2012 when I asked what is wrong with me? I was told I was not smart enough, so he was not going to tell me. Was told by another lung doctor that no one cares about me. Been told by one provider, doctors are screwing with you. So I don’t think I will ever know what is truly wrong or at least ever put in my health chart. My lungs will continue to suffer and me with it. I am within one more trip to be told what is wrong and get help. Then I am going to be honest with you, I will give up. I will post when I go, I will post with the conclusion.

    At this point still same triggers mostly cold. Where I live, 20’s during the day. Causes me to fill with very thick fluid within seconds with breo even. hard time breathing, fast heart rate. Throwing up, gagging from the thick fluid. Still that is better then before. Thanks again.

  • Brenda Silvia-Torma

    Hi MPH, You have the right to ask questions and the right to get to the bottom of things.  Please don't give up!  

    It took me a LONG time to get a team of doctors that I trust. I found most of my doctors through referrals from friends and through my gyn who I greatly trusted.  

    I see myself as the captain of my healthcare team. I want to be surrounded by kind, compassionate, knowledgeable physicians who respect my expertise on me.

    You deserve a doctor that will value you as an expert on yourself. You know yourself best and deserve a doctor who is collaborative and wants to help you. 

    Sending hugs to you!

    Brenda

  • K8sMom2002

    Hugs … I agree with Brenda … everyone deserves to be heard! Do you have a doctor that you trust and have a good relationship with? I've found that doctors tend to refer their patients to doctors who are similar. 

    Don't give up! 

  • Melissa G

    Oh MPH, that is terrible that you have been treated that way! Please, please do not give up! When is your next appt?

  • MPH

    At this point I have no set doctor appt. With my insurance, there are doctors in Buffalo. I asked for Buffalo University teaching doctors. The person I requested is Sean Brady there. Board certified in allergy and immunology. Near my daughter but 5 hour drive away. I know what happens with my lungs. Cold trigger the worst. Buffalo will be ****. If the appt does not go well (don’t think it will because as I have been told “doctors are screwing with you”, I know what to do. No help, I take a walk in the cold until I pass out ( I did this already in 2011, told them). I have seen on pulse ox, my oxygen go to 70 and heart rate to 200bpm. Maybe someone finds me, maybe they don’t. I can’t take it anymore. I have already been told by a doctor no one cares about me, I believe it at this point. No one should have to live as I have for 8 years now.

  • Deborah Bartlett

    Please keep trying to get help. We don't want you to have to go through this. There has to be a way for you to get the help you need. Do not give up. 

  • MPH

    It is one second in cold weather those things happen. Just one step out of house or out of the car. Fine driving or in the house before this. Just one second walking past someone smoking. One second when someone has a candle lit. Once second when I walk past nail salons in the mall. One second sitting giving blood when they use alcohol wipes and leave them on my shoulder. 

    I once had cardiac rehab. The heart tech was my neighbor. She told me my heart was fine but my pacer goes to 140 bpm randomly. Asked a heart doctor and was told it was evidence of heart sarcoidosis. So my pacer has sarcoidosis now. Or doctors are screwing with me. Trust me when you have a piece of equipment in your body that controls your heart and doctors are screwing with you, you don’t trust anyone.

  • K8sMom2002

    MPH, I'm so glad that you are working with a good teaching hospital, and I'm hopeful that they will help you find some answers. Please let the doctors know how much stress you are under and how this impacts your daily life. 

    And also … even if Buffalo doesn't have the answers (which I'm hoping they will), consider going to a hospital like National Jewish or another renowned pulmonary hospital. It would involve a longer trip, maybe even a plane trip, but there are doctors who care and who take a team approach.

    And we care … we care very much indeed!

  • MPH

    I was messed with at National Jewish in NYC, I will not go there again.

  • K8sMom2002

    My goodness! You have had a really stressful time!

    I was referring to a completely different hospital… National Jewish Health in Colorado. I am hoping that you will find a team that works with you to help you get to the bottom of this  

    I’m on mobile, so I’m pasting the link to Denver’s National Jewish below. 

  • MPH

    I did not have the time when it was posted.

    That by far is the most information I ever saw on cold weather trigger. How to deal with it. I tried almost all the things but there is something still very wrong. Plus some things that don’t fit perfectly. 

    My issue is my lungs shut down in one second going into cold weather. I don’t need to exercise. One step is enough for the trigger. Once triggered, I can’t exercise. I can hardly walk. Once inside for a while I finally feel better. Sometimes it triggers lots of thick mucus, wheezing, chest pain, coughing, feeling like an elephant is sitting on my chest and talking funny.

    Attempted to exercise recently. Very cold out. Short walk to the place. Did not fell well. Oxygen at start was 95. 10 minutes later on light work on bike, oxygen was 90. Started another machine, after 10 minutes my oxygen was 95 again. Which is normal for how I feel. It sometimes takes a while until my lungs get better from being outside.

    I wish I could go to such a place. Sadly my funds are gone already. Plus my insurance would not cover it. Thanks for the link.

  • K8sMom2002

    MPH, I don't have to exercise, either, for extremely cold air to trigger my asthma. For me, according to my doctor, the cold air (and actually the reverse as well, too, very hot air) triggers bronchospasms in my lungs. 

    My doc has suggested I pre-treat when I have to go out in very cold weather and to wear a scarf to warm the air before it hits my lungs. 

    A mask may help you this winter … and I know that @Pljohns recently got an electric scarf that warms the air that she breathes.

    Keep pushing for a good diagnosis and a good treatment plan! You deserve it! 

  • Pljohns

    Here's the link for the battery powered scarf I have.  I leave it in my car during the week and turn it on when i leave for work (my car is in the garage so it's not too cold) and by the time I drive 15 min to work, it's good and warm.  i can put it around my face and my lungs don't argue AT ALL with the cold weather/wind.  This thing works better than anything I've ever tried.

  • MPH

    I am getting the heated scarf. Best idea I ever heard. Thank you very much!

  • Shea

    I feel ya, MPH. I have been through a LOT with doctors. They have caused problems and made errors, missed signs, and not made referrals,  and tgen they have fixed problems, made a keen diagnosis in the knick of time, and saved my life,… only to anger me a few weeks later again by talking down to me and giving me meds that nearly killed me. 

    The bottom line is, I need them. For my asthma, for my allergies, for my heart, and my immune disease. And I have found better ways of dealing with doctors over time. I am kinda like Brenda, where I am the leader of my doctors and they are here to help me– but I cant count on them to fix me on their own. They have to be willing to listen to what is going on, explain treatment options, allow me to resesrch things and understand my disease and how a treatment will work and how it will affect other organs. I especially have to coordinate between heart and lung doctors on medications, procedures, and the big picture of my rare immune disease called churg-strauss syndrome. I am actually doung that currently because doctors sometimes just have a routine of this test result then we do this procedure typically, and I have to say, wait doctor– this doesnt make sense to me (which i often dont do in the offuce but once im home thinking it out and then i email them and have another appt)– but im glad i do because i might be able to avoid a procefure and get a good meficine thst takes care of the issue at hand. Sorry Im rambling, my sleep medicine is kicking in so I have to go but I just wanted to say I understand how doctors can give a person a lot of mixed feelings and be tough to trust and when i have those feeling i try to look at the problem logically and step by step: "this is what the test shows– it could be this but i have this problem so it could be that, either way it needs to be treated.. By this or that.. I need this test… And this specialist to do it." That is what helps me.

  • Breatheeasy

    My old primary care would ask me to list all the  specialists I want to see. That was convenient. 

    My new primary care tries to give me meds instead of sending me to a specialist when it’s an asthma issue. And he made my problem worse. And he’s a personal friend so I don’t know if he got over confident or what when he gave me oral steroids but asked me only to take one tablet when I was feeling bad.( I was very bad when I went to him with no prior knowledge of asthma or the fact the I had asthma) And yet he’s the one that was able to point out that somethings causing low BP issues for me and hence breathing issues. 

    I am meeting with an endocrinologist and an immunologist to see what they can find.

    have you seen a gastro? Just to rule out any other causes for it?

  • Breatheeasy

    My ENT knew exactly what I had when I told him what I was feeling but my primary care would just keep dismissing the fact that I have asthma. And yet he kept prescribing oral bronchodilators. 

    I am obviously looking for new primary care. 

  • Brenda Silvia-Torma

    Hi MPH, Is the allergist that you plan to see, Dr. Brady, new to you? If so, perhaps you can explain to him what your symptoms are and see what his perspective is. One of the benefits about seeing a new doctor is the opportunity for a fresh start. Did you get an appointment with him scheduled?

    Brenda

     

  • MPH

    My new regular doctor is working on it she says. She also just told me yesterday what I have sounds like a Bronchospasm. So I google it and bingo me exactly. It is a symptom of asthma and scary. I know that. But it is life threatening. I know that too. I believe I passed out in 2011 from it. Had many incidents since but oxygen does nothing.

    In 2012, I had gall bladder surgery. Simple in and out surgery. I stayed 3 days including Easter. Only patient on the floor in fact. They tell me they could not keep my oxygen up. Oxygen did nothing to help. I believed that incident was near death experience, the doctor dropped the gallbladder and was very nervous afterward. No answer was ever given to me why it happened.

    Read the paragraph on surgery. Should I know before surgery? Should Doctors know?  Should it be in my chart?

     

    New to me and still no appointment.

  • K8sMom2002

    MPH, so glad your new doc is working on things! That sounds like some progress! And yes, bronchospasm can be very scary and sudden. It's important to have a good doctor who will work with you and figure out what triggers it and what you can do about it if and when it happens.

    And it sounds like you have experienced a lot of distress and trauma as you've dealt with health issues over the years. That is always tough to process and to get through. Is there a counselor that you trust that you could talk to? To help you figure out a good way forward?

    Breatheeasy, it can be really tricky to balance things when your doctor is also a personal friend. I have docs who are friends and family who say that they would prefer NOT to treat people they know closely because it is so much harder. I find, too, that I prefer not to go see them when I'm sick or when a family member is sick. I don't want to make things harder for either of us.

    I do ask them for referrals and thoughts on any specialist that I might need to see. And they are glad to give those to me! 

    I'm glad you are seeking answers to your questions. I'm hoping you'll get good answers soon!

  • Melissa G

    MPH, yes all medical history and diagnoses should be discussed with the anesthesia team. My youngest has asthma, so we have a protocol to follow every time she goes to the OR. She usually has procedures 3-4 times a year. 

  • MPH

    Just received my heated scarf, it gets hot for sure. Even if it gives me a little relief, I will take it. Thanks again.

     

  • Breatheeasy
    K8sMom2002 posted:

    MPH, so glad your new doc is working on things! That sounds like some progress! And yes, bronchospasm can be very scary and sudden. It's important to have a good doctor who will work with you and figure out what triggers it and what you can do about it if and when it happens.

    And it sounds like you have experienced a lot of distress and trauma as you've dealt with health issues over the years. That is always tough to process and to get through. Is there a counselor that you trust that you could talk to? To help you figure out a good way forward?

    Breatheeasy, it can be really tricky to balance things when your doctor is also a personal friend. I have docs who are friends and family who say that they would prefer NOT to treat people they know closely because it is so much harder. I find, too, that I prefer not to go see them when I'm sick or when a family member is sick. I don't want to make things harder for either of us.

    I do ask them for referrals and thoughts on any specialist that I might need to see. And they are glad to give those to me! 

    I'm glad you are seeking answers to your questions. I'm hoping you'll get good answers soon!

    Yeah this personal friend was someone I went to when I was in between jobs and had no insurance. I was suprised though when he said he had no idea people could have adult on-set asthma. Well most of the people I went to school with went on to be medical doctors or do related things so I go to them once in a while for advise. I can’t believe how many doctors(mostly internal medicine ) have never heard about adult onset asthma.