Discussions By Condition: I cannot get a diagnosis.

Would like some opinions on my situation

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: supa_pokute
  • July 28, 2012
  • 06:48 AM

Hello everyone,

I'm a 27 year old male, and since I was 2 or 3 years old I was diagnosed with asthma. I would go the emgerncy room every year growing up with asthma attacks, and everytime I got sick with the cold I would always have bronchitis coughing up stuff. Anyway through out my childhood and into my adulthood I ended up having fairly well controlled asthma with medication and plans. If I was near one of my triggers I knew it because I would wheeze, have classics symptoms, etc. One thing that has bugged me to no end that I am trying to figure out is that even during this time in my life, I would ALWAYS get decent results on my peak flow. Meaning even if I found it very hard to breath, I would blow my hardest, and my average would usually stay exactly the same, above the green. I will get back to this in a second...

The last three or fours years of my life have been very diffcult. Right now I'm trying to figure out if asthma is still my main problem or if I have more severe COPD issues. I have never smoked in my life and have been told countless times by doctors that you cannot get COPD from not smoking, yet I've read in books and online from others that you can if you have been exposed to triggers for a very long period of time. Both of my parents growing up smoked, we lived in a very moldy old house (it was a pioneer house 200 years old, in MA) and I didn't get out much. The main symptoms I have now are:

1. I will wake up in the morning and not be able to get a full breath of air. I will use my abuterol (rescue) inhaler, and it will only open my airways a little bit. My nebulizer machine will do a much better job, but my airways go back to being closed up after a few hours. This feeling stays with me through out most of the day, and sometimes eases up a bit during the night.

2. I will constantly cough up yellow mucus from my chest, with very solid color. No blood.

3. I cough constantly, and have been asked if I'm okay many times by my friends or co workers.

So with these symptoms, it has been very hard to live happily, and I have been to about three different pyshicians and two different specialist in the last few years. I am not going to name names, but I will be honest; I feel like I got no help whatsoever. They have told me because my peak flow looks good and that my chest doesn't sound too bad or has little tightness that I'm okay. I have tried medications for a long period of time like singular, advair, ventolin, flonase and some others with little to no effect that I could see. I have had an x ray done on my chest and blood tests, but they come back okay.

A few more points. One is that I am allergic to many things, including cat dander, dust mites, blue grass, dog dander, oak, rabbit, and a few others. I grew up with animals so I'm sure that didn't help, but I live with my girlfriend now and we have no pets, I have a HEPA filter machine, I clean on a regular basis and follow most steps to a asthma free home.

The last point and something I thought might be the problem to all of this is that I know I have very bad acid reflux. No matter what diet I have tried (low acidity, GERD diet), I will always feel the food come up my throat and feel the need to burp alot. This only started getting worse the last three or four years of my life (just like the asthma symptoms). I thought maybe I was aspirating the food or liquid into my lungs, but my gastro doctor told me I wasn't and said I have low acidity levels. =/

Anyway sorry for such a long post, but this is really effecting my life. I used to work out and exercise every other day when I was in my early twenties, but now it's so much harder to do because of this and I feel like I've gotten no help from my doctors. They give me an asthma action plan which does nothing because my triggers never happen; I always feel like this and symptoms are always on full alert. My peak flow is useless to me because my numbers don't waver and I've never been below green. Any advice would really, really be appreciated and I welcome it good or bad.

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14 Replies:

  • Anyone have any tips or help?
    supa_pokute 1 Replies
    • August 16, 2012
    • 05:47 AM
    • 0
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  • I would suggest you read an article on asthma: http://www.preventionandhealing.com/articles/Asthma_Are_We_Missing_Something.pdf, I recently went to this doctor myself, he or someone similar could really help you.
    Anna123 4 Replies
    • August 20, 2012
    • 05:31 PM
    • 0
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  • I'm sorry you haven't had any solid answers all of this time. I know how that goes with undiagnosed arthritis problems I've had for 37 years.2 things;1. I do believe that acid reflux has been making it worse, especially since you wake up with a hard time breathing! I had a similar problem (on a much smaller scale), and that's what it was.2. Something that can help significantly is a wheat-free diet. Try reading "Wheat Belly", by Davis MD, William. Asthma is one of the dozens of problems that wheat causes. It just may change your life!All the best,Miss G
    missg2u2 8 Replies
    • August 21, 2012
    • 02:15 PM
    • 0
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  • Have you ever heard of the Buteyko method? They teach you how to retrain the breath. A friend of mine had asthma for 30 yrs., used the inhaler all the time...He started studying Buteyko and now is fine. I even tried it to see what it was. It's not hard.Also, how is your diet? Are you eating any dairy products? Certain people (myself included) cannot tolerate milk products, the body in an effort to get rid of the mucus, coughs. Stop dairy if you are eating it and see in a few weeks if the cough goes away.Here is a link that explains more about the technique.http://www.nytimes.com/2009/11/03/health/03brod.html?_r=2&em
    Anonymous 42789 Replies
    • August 23, 2012
    • 01:07 AM
    • 0
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  • copd and asthma are caused by the use of antibiotics(fungus)... and its not your average plant fungus...it is an animal fungus renamed by the medical comunity as candida....it is an acidic based parasite...it has acid for blood....when it dies it gives off large amounts of acid which raises your bodys acid level PH to a 5....the first thing you can do to rapidly raise your alkalinity is with everyday bakeing soda... take a heaping tablespoon of bakeing soda and sprinkle it into a tall glass of water , wait 15 seconds and pour off the bicarbonated water and dispose of the sodium ... then drink the bicarbonated water....do this twice a day for as many days as required to raise your PH to a 7.4.... test your saliva with litmus paper from the health food store...that will cure your acid reflux...next you need to kill the antibiotics that are liveing in your body...first go on the candida diet; no sugar and no carbohydrates... then get from your health food store;MSM 1000mgs per day, ZINC/100mgs three times per day....phytostan/food grade undecylenic acid.... and PURE SULFA/pet med on ebay....you will get loose bowles for a few days thats normal..... the body goes into flush mode and gets rid of dead fungus............ GOOD LUCK AND DO NOT WORRY... there are no side affects
    natureboy777 1 Replies
    • August 25, 2012
    • 05:15 AM
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  • It may be helpful to look up black seed oil this may help you...
    number1 1 Replies
    • August 26, 2012
    • 07:26 PM
    • 0
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  • Hi don"t know if this will help or not. My daughter was diagnosed with asthma when she was about 16. She constantly had episodes of not being able to catch her breath. She was given several different medications and nothing seemed to help. We took her to a different pulmonologist where he did much more in depth testing. He found that she did not have asthma at all and her medications were making her worse. It was suggested that she see other specialists (she saw many) allergist etc. She eventually went to a gastroenterologist (she also suffered from GERD) and an endoscopy was done. She was diagnosed with eosinophilic esophagitis. We were told that sometimes EE can be misdiagnosed as asthma. You can find more info here: http://www.medicinenet.com/eosinophilic_esophagitis/article.htm. Don't know if this might pertain to you or if you have already ruled it out but your symptoms are very much like my daughters. In forums about EE you can find others who have been diagnosed with asthma by mistake. Not saying you don't have asthma but possibly it's compounded by this. I truly hope you get to the bottom of your illness. My daughter is now 25 and has a whole bunch of other things going on not related to EE but has a very difficult time getting any Dr to understand that she is not overstating her symptoms. Most look at her and remark that she is to young to be feeling so poorly and it must not be that bad. I can attest to it being "that bad" for her. All she really wants is to wake up one morning and say she feels great. I'm guessing you might feel the same. Don't give up until you can do that.
    kathsmcl 2 Replies
    • August 28, 2012
    • 06:28 PM
    • 0
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  • I have a relative that went through very similar symptoms and medical history as your own. After suffering for more than 20 years he was diagnosed with a hiatal hernia , accidentally when he was having a ct scan of the chest and abdomen with CONTRAST for an unrelated suspected condition. It is when the (don't know the technical terms) muscle at the top of the stomach is weak or damaged, a large portion of the stomach is herniated into the chest cavity. The symptoms are the acid reflux, breathing oddities without relief from inhalers, etc. Please mention this to one of your physicians. If you continue to have the acid, it can cause severe throat problems as time goes on, affecting your vocal chords. Please talk to a gastroenterologist who will listen or your primary care physician can order the ct scans. It can not hurt. I do not think this is related to the lungs.
    juliann126 1 Replies
    • August 29, 2012
    • 03:12 AM
    • 0
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  • Has bronchiectasis, from your childhood chest infections, been considered? Although it may not affect your treatment all that much.
    claireredhair 4 Replies
    • August 29, 2012
    • 09:32 PM
    • 0
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  • Hi, don"t know if this will help or not. My daughter was diagnosed with asthma when she was about 16. She constantly had episodes of not being able to catch her breath. She was given several different medications and nothing seemed to help. We took her to a different pulmonologist where he did much more in depth testing. He found that she did not have asthma at all and her medications were making her worse. It was suggested that she see other specialist (she saw many) allergist etc. She eventually went to a gastroenterologist (she also suffered from GERD) and an endoscopy was done. She was diagnosed with eosinophilic esophagitis. We were told that sometimes EE can be misdiagnosed as asthma. You can find more info here: http://www.medicinenet.com/eosinophi...is/article.htm. Don't know if this might pertain to you or if you have already ruled it out but your symptoms are very much like my daughters. In forums about EE you can find others who have been diagnosed with asthma by mistake. Not saying you don't have asthma but possibly it's compounded by this. I truly hope you get to the bottom of your illness. My daughter is now 25 and has a whole bunch of other things going on not related to EE but has a very difficult time getting any Dr to understand that she is not overstating her symptoms. Most look at her and remark that she is to young to be feeling so poorly and it must not be that bad. I can attest to it being "that bad" for her. All she really wants is to wake up one morning and say she feels great. I'm guessing you might feel the same. Don't give up until you can do that.:)
    kathsmcl 2 Replies
    • September 4, 2012
    • 02:14 PM
    • 0
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  • Anyone have any tips or help?I don't know much about the allergy symtoms, but I can suggest on the GERD. I had the exact same thing almost daily for 25 years. It is awful. I tried many meds but nothing worked. I then met someone in the pharmacy industry who told me to take Prilosec every morning. I do so and I have never had it again. If I remember, it may take a week or so to really kick in but I have been taking it for 6 years now and have never had one bout with it again. I am thrilled to say that I can even eat things that I used to know that I could never eat. If you have a copay situation with your insurance, it is cheaper to have your doc give you a prescription for it, but otherwise you can buy it over the counter at any drug store or even walmart. You should always check with your doc about taking any meds (even over the counter) if you know you have other medical conditions as well. And also remember that what works for one person does not always work for another, but I would certainly give it a try!! The second thing I would like to say is that 2 or 3 doctors is nothing. I had a severe chronic neck pain situation for 6 years recently and went through 2 spinal neck surgeries and an unbelieveable amount of tests (some VERY painful) with no help. No quality of life whatsoever. Severe pain 24/7. I went to somewhere between 20 and 30 doctors (and I mean specialists) refusing to accept "I don't know" or whatever excuse they gave me that day. I constantly researched the internet myself and saw where the problem could possibly be in my shoulder. My doc did an MRI at my request and my shoulder was a disaster. Woke up from shoulder surgery and my horrible nerve pain in my neck was gone. My point here is that many times doctors get stuck in a box, because some other doctor decided it was neck pain. Nobody was thinking outside of the box that it could be something else if they weren't finding the answer. Sounds like the same kind of situation to me with your breathing problems. My other MAJOR point is that NO DOCTOR pushed me to continue to go to other doctors for an answer. Sweetie, YOU MUST BE PROACTIVE FOR YOURSELF! You know that your body is telling you that something is wrong and it is up to you to exhaust every doctor and every test possible (if your insurance or finances allow it of course). Do not let them get you down. If you go to a new doctor (which you absolutely should if they are not proactive), don't let them put you in the same old box that hasn't worked before. Don't tell them about all of the different diagnoses that you have been given by other doctors. Tell as little as possible and let them figure it out on their own. I had completely given up on any future and was exhausted (but my stubborness kept me fighting). My situation can tell many folks that there is always HOPE and that there is usually an answer out there if you are willing to fight hard enough to find it!! I hope this helps in any way!! Sometimes, getting control of at least one issue gives you more energy to fight the other one. I wish you the best of health in your future sweety!! Nettie
    nettiej526 1 Replies
    • September 10, 2012
    • 05:28 PM
    • 0
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  • Hello everyone,I'm a 27 year old male, and since I was 2 or 3 years old I was diagnosed with asthma. I would go the emgerncy room every year growing up with asthma attacks, and everytime I got sick with the cold I would always have bronchitis coughing up stuff. Anyway through out my childhood and into my adulthood I ended up having fairly well controlled asthma with medication and plans. If I was near one of my triggers I knew it because I would wheeze, have classics symptoms, etc. One thing that has bugged me to no end that I am trying to figure out is that even during this time in my life, I would ALWAYS get decent results on my peak flow. Meaning even if I found it very hard to breath, I would blow my hardest, and my average would usually stay exactly the same, above the green. I will get back to this in a second...The last three or fours years of my life have been very diffcult. Right now I'm trying to figure out if asthma is still my main problem or if I have more severe COPD issues. I have never smoked in my life and have been told countless times by doctors that you cannot get COPD from not smoking, yet I've read in books and online from others that you can if you have been exposed to triggers for a very long period of time. Both of my parents growing up smoked, we lived in a very moldy old house (it was a pioneer house 200 years old, in MA) and I didn't get out much. The main symptoms I have now are:1. I will wake up in the morning and not be able to get a full breath of air. I will use my abuterol (rescue) inhaler, and it will only open my airways a little bit. My nebulizer machine will do a much better job, but my airways go back to being closed up after a few hours. This feeling stays with me through out most of the day, and sometimes eases up a bit during the night.2. I will constantly cough up yellow mucus from my chest, with very solid color. No blood. 3. I cough constantly, and have been asked if I'm okay many times by my friends or co workers. So with these symptoms, it has been very hard to live happily, and I have been to about three different pyshicians and two different specialist in the last few years. I am not going to name names, but I will be honest; I feel like I got no help whatsoever. They have told me because my peak flow looks good and that my chest doesn't sound too bad or has little tightness that I'm okay. I have tried medications for a long period of time like singular, advair, ventolin, flonase and some others with little to no effect that I could see. I have had an x ray done on my chest and blood tests, but they come back okay.A few more points. One is that I am allergic to many things, including cat dander, dust mites, blue grass, dog dander, oak, rabbit, and a few others. I grew up with animals so I'm sure that didn't help, but I live with my girlfriend now and we have no pets, I have a HEPA filter machine, I clean on a regular basis and follow most steps to a asthma free home. The last point and something I thought might be the problem to all of this is that I know I have very bad acid reflux. No matter what diet I have tried (low acidity, GERD diet), I will always feel the food come up my throat and feel the need to burp alot. This only started getting worse the last three or four years of my life (just like the asthma symptoms). I thought maybe I was aspirating the food or liquid into my lungs, but my gastro doctor told me I wasn't and said I have low acidity levels. =/ Anyway sorry for such a long post, but this is really effecting my life. I used to work out and exercise every other day when I was in my early twenties, but now it's so much harder to do because of this and I feel like I've gotten no help from my doctors. They give me an asthma action plan which does nothing because my triggers never happen; I always feel like this and symptoms are always on full alert. My peak flow is useless to me because my numbers don't waver and I've never been below green. Any advice would really, really be appreciated and I welcome it good or bad. Not sure if this will help but after years of misdiagnosis for MS my sister in law came up with a plan to help many people who might have symptoms or diseases related to many different food allergies. It has helped her and others tremendously. you can view her testimony at www.jansrecipebook.com. hope you get relief. Praying for you.
    Anonymous 42789 Replies
    • September 11, 2012
    • 06:48 PM
    • 0
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  • Have you ever looked up Churg Strauss Syndrome? It starts out as bad asthma and then it can cause gastrointestinal problems. I came across this condition when I was researching the results of my MRI's. I have never had asthma but i've suffered sinus problems my whole life and after the birth of my son I developed allergies to all sorts of things. I hope you find out what is causing your problems best of luck.Leslie
    leslie6074 4 Replies
    • September 28, 2012
    • 05:21 PM
    • 0
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  • The EE suggestion sounds really good. I was also thinking of a hiatal hernia when I was reading your post. It may also be worth looking for some kind of mass in your abdomen or chest that could be pressing on your stomach and lungs. Tests and scans to look for these are fairly easy.I was misdiagnosed with asthma because of breathing problems but multiple doctors agreed they couldn't hear me wheezing. Pulmonary function tests later showed I didn't have asthma. The asthma medications seemed to make me worse. An astute ENT said he thought it was neurological. Unfortunately, I had already been taking steroids, which made me worse. It turns out I had Lyme Disease, a neurological infection that was impeding the signals to my breathing muscles.
    Pearl66 6 Replies
    • October 15, 2012
    • 03:08 AM
    • 0
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