No Doctor can diagnose me or come up with a straight answer. Feeling lost.
Posted , 7 users are following.
Hello Everyone,
I wanted to post on the forum regarding what I have been struggling with for a little over a year now. I have talked about this with my physician multiple times and I have even seen a pulmonary specialist multiple times. The first time I went the doctor did not suspect anything wrong with me so he didn't want to order any tests but rather put me on a medication called Beru or Bero (Its an inhaler). I did the inhaler for two weeks without any improvement to my condition. So I asked him if we can perform a Pulmonary function test which he didn't think it was necessary but I wanted to do it so he ordered it and I will post the results with you. I also went to see an allergist/ENT doctor who said that I have a bit of a deviated area in my nose which is why he believes i might be wheezing through my nose. He also ran a spirometry test which I will post.
I should explain a little about myself and what I am currently dealing with cause this post is probably very confusing right now. I am currently a three year Firefighter/EMT about to start college for Nursing in two weeks and eventually work my way up to achieve my masters degree in Nurse Practitioner. For the past year and a half I have came down with a weird breathing issue that no doctor can seem to figure out which has me left in a corner without answers. Throughout the day I have this constant struggle of taking deep breaths. When I go to take a deep breaths I can complete it cause it feels like my lungs are hard and wont expand fully which cuts of the deep breath and leaves me very unsatisfied and left with a feeling of needing more air. Every now and then I will have a very very mild cough where it feels like I have ti cough but its not even like a cough but rather like a clear the throat kind of hack but thats it. Nothing comes up and I'm not coughing up anything. I also get heart palpations really bad throughout the day but they go away and come back so its quite random. I would like to consider myself a very healthy individual and by that I mean I have never once did any drugs or picked up a cigarette. The only issue is growing up I was around second hand smoke due to my grandparents but my parents never smoked. Now working at the fire station I'm around cleaning supplies that give off fumes, Dust, Fumes from the engines and of course second hand smoke from employees and smoke when we get fires. I try my best to avoid all these exposures but when the guys are barbecuing its really hard to avoid the smoke coming from the barbecue cause it gets into the station. I should also mention before I forgot that according to allergy test I am allergic to Dust, Trees, Grass and certain insects. I will also post these results.
My main concern with my pulmonary function test is my results are normal but at my age only being 23 years old I am worried that my results are not over the 100% mark and I'm not understanding why cause a lot of people my age are. I feel like even though I am in the high 80’s and 90’s, I will decrease so quick and develop a terminal illness and I'm worried. As you can see from my pulmonary function test graph at the bottom my graph coves in slightly and is it just me or does that not indicate an obstruction (slight).
I do not have any medical history other than my allergies. No lung issues run in my family that I am aware of. The only thing that I know that runs in my family is CHF, Diabetes, Hypertension, Alzheimer’s. I am not due for another pulmonary function test until 6 months from now so I'm hoping nothing will decrease or if possible I'm hoping something might increase but I doubt thats possible.
I also wanted to mention that for the past week I have been getting really uncomfortable heart palpations randomly throughout the day and it feels as if my chest or lungs feel sore and I am not sure if this is due to maybe taking deep breaths to try and catch my breaths cause they are getting cut off. Yesterday at work I was coughing a decent amount due to a tickle feeling in the back of my throat but that kinda went away. Now its just a very minor cough where it is very random. Another symptom I recently have been experiencing like crazy is my stomach feeling bloated all day even when I first wake up which makes me feel like maybe my diaphragm is pushed down into my stomach and is not working properly? I really have no idea and no Doctor can figure out a reason. I doubt I have congestive heart failure or any heart problems at 23 years old especially since I eat right and take care of myself but exercising routinely.
I want to apologize for the long post but I wanted to give as much info as possible and I really appreciate anyone who did read all of this.
1 like, 22 replies
Annaflare MattC2146
Posted
I can't provide you with an an exact asnwer to your problems but It's possible I might be able to give you a potential idea for investigation. To me those numbers and graphs looked excellent, but my lung function rarely gets above 68%, I only wish mine were that high.
I'm going to suggest something here, based on what you've said, the palpitations, the bloated feeling... the unexplained breathing problems, I'm starting to wonder whether you might actually have a hiatus hernia. A hiatus hernia, can cause palpitations, a feeling of reduced ability to breath and reflux which can irritate the lungs somewhat and cause breathing issues (it can cause far more than that, it can mimic a lot of other complaints). Some people can have reflux without getting heart burn!
MattC2146 Annaflare
Posted
Hey Annaflare,
Firstly thanks for replying to my post. Even though you couldnt give me an exact answer to my problem you did atleast try to give me a starting point and that is very much appreicted. Im sorry to hear about your lung function result. DId you get diagonsed with asthma? How old are you if you do not mind me asking. Im glad you believe my numbers are great and I agree with you but my only concern with my numbers are not understanding why they are not atleast 100% or higher cause a lot of people my age are.
Its interseting you mention the hiatus hernia cause a few months back I was thinking that it very much could of been this but didnt decide to look into it futher cause i didnt see how my symtoms could be caused from it. I do know that my father has a history of acid reflux so maybe I could very much be getting that too but I do not get that burning feeling in my espohagus.
My question to you is if I did have this hiatus hernia wouldn't it of showed up on the chest X-Ray I had months back? If not what doctor or specialist should I see to try and see if this is what is causing my issues?
Again thank you so kindly for replying to my post and being so kind! Hope you are doing well!
Annaflare MattC2146
Posted
Sorry it's taken me forever to get back on here. Yes, I have officially been diagnosed with asthma and a very large amount of asthmatics also have VCD (I saw it mentioned by someone else). I had my first attack when I was about 6 months old, and I'm 36 now. I've been seeing respiritory specialists for years and years and years.
The medications I have on hand are ciclesonide, atrovent nebules, ventolin nebules, prednisolone, spiriva, symbicort, ventolin and atrovent inhalers. Symbicort and ventolin are my main two... and I can escalate the meds as needed.
I'm also diagnosed as having VCD, the main thing with VCD is the tightness is more when you breath in, rather than when you breath out (asthma). Your little graphs do show a variation which could be indicative of VCD when you've inhaled on the tests. In asthma, when you're doing the breathing out the line tends to be very visibly scalloped rather than straight.
To rule out asthma, has anyone actually done a hypertonic saline test? Also, it's very common for the tests to degrade with each successive one.... to a point. So the asthma challange test (aka breathing in a hypertonic saline solution) is designed to cause airway constriction in people with asthma. Also has anyone done an exhaled nitric oxide test, this is another asthma test, that checks for any chronic inflammation. I've had all these tests more than once over the years.
And yes, in theory a hernia would show on a chest x-ray
MattC2146 Annaflare
Posted
Hey Annaflare,
Hey no worries about the response time. I know everyone probably has jobs and a family that need to be taken first so trust me when I say I competely understand =). How did you get diagonsed with the VCD condition? Have asthma as a little kid must be very scary seeing that you are 36 now and still have it. With me I was never diagonsed with anything regarding my lungs and I still haven't been but I always feel like the doctors are missing something.
I am not trying to sound rude when I say this but that sure is a decent amount of medications that you are taking and that must be annoying keeping up with all of it.
I do not believe anyone has performed a hypertonic saline test or a Nitric Oxide test. Honestly I never even heard of these tests so i doubt I was even given them unless they are performed in the Pulmonary Function Test that I took a year ago.
Just recently for the past two days I have been feeling really restricted in my nose and it always sounds like I am wheezing through the nose on an inhale and a exhale. My chest is still very tight constantly.
Annaflare thank you again for being so kind and responding to my post!
terry_24368 MattC2146
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Aschm32186 MattC2146
Posted
MattC2146 Aschm32186
Posted
Hey what's up
Firstly thank you for responding to my post friend and giving me some insight. I hope I don't sound like a jackass when I say this but I am somewhat relieved knowing that I am not the only one that suffers through this. I know a little over a year ago when I did have my first Pulmonary Function test the pulmonary specialist said I am having broncho spasms but didn't even explain to me what that means or what is causing it. All he did was give me that inhaler and told me to use it which i did and nothing changed so I just thought that he just made up something cause he truly didn't have an answer for me. Yeah I think I'm going to set up am appointment with a Cardiologist again to run a few more tests and maybe set up an appointment with a chiropractor to get an adjustment. Maybe all my muscles are tight which is causing the tight feeling I don't know. Worth a try but dude again thank you for responding to my post and I hope everything is okay with you!
green881 MattC2146
Posted
The medication is Breo and it's a combination ICS and LABA. They are very common under many brand names. IMHO you should not be prescribed that unless diagnosed with Asthma and you first try abluterol and then step up to long acting treatments.
Other people on the board - am I wrong and my opinion above? In my childhood when my asthma was more severe we only went to those combinations as 3rd resort and the pediatrition wanted several follow up visits until you're able to come off it. Why does it feel like docs today are giving it out like candy?
If this tightness and short breath feeling comes and goes during the day or when not exposed to the smoke/chemicals then it sounds to me like what I have. Classic asthma. I f you have it constant 24 hrs a day then I would not have a clue. I have less idea why they would suspect you are wheezing through your nose. What I'm not getting is why several doctors ruled out asthma? Is that what happened?
MattC2146 green881
Posted
Hello sir
Firstly thank you for posting a response to my question cause it is very much appreciated. I apologize for getting the medications name wrong. I do agree with you that being prescribed medication to just "try" it is never a good idea cause when I went in for my first Pulmonary Function test he did mention that I do not have COPD but "might" have early asthma but said it didn't show enough to diagnose me with it so that's when he gave me the inhaler to try. Which I did try the inhaler for a week but if I were to be completely honest the inhaler really didn't help at all so I stopped on my own cause I didn't like the idea of just puffing random medication into my body especially since it was not doing anything.
Trust me when I say this, doctors today in my opinion really don't know as much as they would like us to believe which is why I think they just prescibe medications left and right to see which one will work and when one finally does then they act like they knew that was the condition the whole time. Whole last year I was put on so many different medications that did nothing in regards to my condition so I stopped taking them cause it's just drugs in putting into my system that is not doing anything.
I know I have a severe allergic reaction to dust which is all over here in Georgia and at my.fiee station which at the station I would say my symptoms are the worse but even when I'm home my symptoms are persistent. The only time the symptoms go away is when I am sleeping but once I wake up again it starts all over which is so weird. Now the condition does not prevent me from doing any form of cardio but it does make cardio difficult sometimes. No doctors have said I was wheezing through the nose thats what I think cause I get this minor wheeze sound from the nose throughout the day. No doctors have actually ruled out asthma but they also didn't diagnose me with it which is why 5 months from now I'm due for a pulmonary function test again.
I really appreciate you man and giving me information that can help me. I know in my family no one has ever had asthma or any lung problems other than sleep apnea. Just heart disease runs in my family but on my mom's side of the family there are a few smokers. Anyways man thanks again for replying to.my post and being so kind. I really do appreciate you.
green881 MattC2146
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I'm not following: Are you saying they gave you Breo and no other medication? No rescue inhaler, red, blue or yellow? Breo can take weeks to work so you should not discontinue it. But they should have given you another one which gives immediate relief. If it doesn't work immediately then you probably don't have asthma (if you are using it correctly).
If you like I can tell you a few easy ways to prove it one way or another. One problem of breating tests in the doctors office is that unless you bring a bag of dust with you, you may be completely over it by the time you go there. My dust allergy is like that.
MattC2146 green881
Posted
Hey man sorry it took me a couple days to reply. Work has me doing crazy amount of work but now I'm finally able to respond.
Yes sir the only thing they gave me was the Breo and no other Inhaler. All I was given from that Pulmonary Doctor was the Breo inhaler and one container of pills that were a steroid (can't remember the name of them). Well the unfourante thing is the Doctor didn't advise me of anything about the inhaler other than how to use it which I did right in front of him and he said that's correct. Now I wish he would of told me that it take a couple weeks to workncause if I knew that than I wouldn't of stopped after a week.
Yes exactly I feel like every time I go for the breathing tests I feel normal enough to do pretty decent of the tests but if I'm at work I'm not saying I would fail the tests but I feel like the numbers "might" be a little lower.
I really appreciate you replying back to me. You been really informative and I am grateful for that.
green881 MattC2146
Posted
You sound like you have typical dust/smoke allergy and maybe a tinge of pollen thrown in for good measure. I think Georgia should be pretty green this time of year, if I remember it's been a while since I was there.
Well I can only give you my $0.02: Since it appears you are not currently taking the Breo, call the doctor back, so you want a new prescription for Albuterol and Qvar 40mcg. Albuterol comes in three brand names in the US - Ventolin, Proventil and Proair. You may check with your local drugstore first which they have in stock and which is the lowest copay and have him prescribe that- they are all the same.
Read the instruction, don't exceed the dose. Take the full dose Qvar (2puffs morning and night) for 2 weeks and see if your albuterol use declines. Don't OD on albuterol, if 2 puffs in 4 hours fails to help call the doctor back right away.
I think he should be able to do it over the phone and fax it into the drugstore, otherwise find another doctor. Clearly he is not helping you.
MattC2146 green881
Posted
Hey Green881,
Its nice to hear back from you again. According to my allergy test I am allergic to dust, pollen, grass and so on which does make sense cause when I was living in New York I never once had any of these issues but once I moved here to Georgia (worse mistake) everything has went to crap cause the pollen count is always damn high here in the summer and there is always dust somewhere. Yes Green881 you are correct in saying that Georgia is green this time of year and good for you getting out of Georgia cause in my view it sucks here but some people like it here so I hope I dont offend anyone in saying that. Once I get my nursing degree though im out haha.
Well as of right now when I called the doctor back he did not feel the need to perscibe me the inhaler right now cause we already have an appiontment set up for a Pulmonary Function Test and he wants me coming in before hand not taking any medication so hopefully we can find the root of the cause if there is any. I agree with you though about the drugs and taking them and if he does decide to perscibe me afte the test I will for sure talk to him about not only prescribing the Breo but the other inhalers along with it since it seems like you know what you are talking about.
Green881 Thanks again for replying to me and being so kind and at least giving me some information to work with and setting a path for me. I greatly appreciate your comments and all your help =).
green881 MattC2146
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The Qvar and albuterol (Ventolin or Proventil) are instead of the Breo, not along with. Your allergies sound like classic asthma potential. The deep breathe thing I don't know - maybe you have both. In my book if two puffs of albuterol don't either partially or fully relieve your breathing symptom within 15 minutes I doubt it is classic asthma unless you have it really bad. When asthma niggles at you it can make you want to breathe deeper, but once you are used to it maybe it doesn't worry me as much.
MattC2146 green881
Posted
Hey Green!
See and that's exactly why I don't believe it's classic asthma cause when I did use that Breo for the week, after taking two puffs of it correctly I did not feel any difference in my symptoms. I really doubt it's classic asthma as well due to the reasoning of me not really having a true asthma attack. Like If I didn't tell anyone of my symptoms they would think nothing was wrong with me until I told them and then they would most likely notice. Yeah this has been so constant for almost two years now with a normal chest x-ray, normal blood test, normal EKG, normal Pulmonary Function test and spriometery. It's really hard for me to even take a guess what could be the reasoning behind this cause it's not normal and it's not anxiety. Honestly I think it's early early COPD that the doctors are not detecting due to my age and no smoking history. That's the only thing I can think of right now until my next PFT
It was nice hearing from you again Green! Hope everything is well with you!!
green881 MattC2146
Posted
I am saying two puffs of Abluterol, not Breo. I don't think Breo will give you immediate relief. Albuterol in the US comes as Ventolin or ProAir or Proventil -- all the same. Try that, and if it helps, then to me it sounds like classic asthma.
When I feel it coming on people around can't tell either.
MattC2146 green881
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I recently about two days ago just got my ventolin inhaler and I have been using it for the past two days and honestly as of right now I have had no relief whats so ever in my symptoms and this is why I am thinking its not asthma and could very well be early COPD. I know I am using it right too and thats why I am not sure what else to do. I use the inhaler only twice a day for a total of four puffs.
green881 MattC2146
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Ventolin is short acting. i've been taking it for 45 years. Maybe 15-30 minutes. If you take it in the morning it will not help a shower of pollenn in the afternoon. You shoould carry it with you at all times for a week just like I am since I had my event two weeks ago. When you feel the symptoms coming on take 1 puff. If it does not begin to relieve within a couple of minutes, take a 2nd. No more than 2 puffs in 4 hrs. It's best to breath in deep as you puff and hold for 5 seconds and not breathe out too fast. It all should be in the booklet and is certainly on their website.
Try that and let us know! Best of luck.