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
OregonAsthma MattC2146
Posted
hi Matt,
?Holy smokes I came here to post my own story and your first few paragraphs were like you were writing my biography. Primary symptom was need to take a deep breath or satisfying breath which started in Jan out of the blue. Very good PFTs, and many tests by pulmonary, caridiologists, ENT, Gastroentereologist, and sleep apnea doctors. They still don't have a good answer for me but I can share my experience and maybe you can keep me posted on your progress. LIke you I have a lot of anxiety this is some early sign of a more serious lung disease but they have not found evidence of that in my PFTs or HD CT scan.
?As part of this medical investigation, I was diagnosed as having asthma as well. I take singulair and an arnuity inhaler daily for asthma control. I find that although I also have allergies the only time I have had a "classic" asthma attack or albuterol works is when I had a very bad upper respiratory infection in late Feb. So my belief is I have a form of asthma that is exasperated by having a cold but less so external allegens. Neither my asthma doc or I think this deep breath thing is asthma related. The reason is I test myself on a peak flow device when I have bad symptoms and I can always still hit 800 on the PFD. So my airway isn't constricted when the urge comes on for a deep breath. Additionally I have an oxygen level device I check on my finger and its always a normal reading 96%-99%.
?To you question about a hiatal hernia. That is a good thing to check out. In my case though I did have an endoscopy and found no evidence of a hiatal hernia. Nor did either the gastroenterologist or ENT see any evidence of GERD. I was placed on Nexium "just in case" but plan to ask the gastro we stop that in a couple weeks. It hasn't done anything for my deep breath issue.
?Eventually, my asthma doc has suggested my deep breath need might be anxiety related. You can google sighing dyspnea if you want more information. I'm unsure about this diagnosis as this started for me in Jan of this year and I didn't have any trauma nor do I find there is any pattern to the sensation. It happens when I'm perfectly relaxed not just when I'm stressed. In fact, it is slightly worse a night. One aspect of my sensation is it never effects my sleep, and I never have symptoms when I first wake up.
?I also have some transient (they come and go) very minor irritation in different places on the upper part of my chest. Its pretty low pain wise *I'd give it a 1-2 on a scale of 10). I was diagnosed with very mild bronchitis after my CT scan Ithe pulmonologist and asthma docs did not pick it up listening to my chest). So right now I'm contemplating whether to try another z-pack to see if its come back.
?There is another cause of deep breathing issues called Vocal Cord Dysfunction you can also check out with an ENT. I did that though and mine were performing normally. I'd welcome your or others thought because I do understand the anxiety the condition causes and worries about it being a precursor to something much more serious. I can tell you for what its worth, neither my pulmonologist or asthma doc are very concerned about the condition (which is sort of mixed blessing) and I have similar PFTs as you plus had the CT HD scan which showed my lungs were clear (minus the slight bronchitis).I have recently I have been able to slow the deep breath, and contain it my upper chest which lessens the mechanical motion with it. It also has reduced a bit in frequency and duration the past couple months but still comes for a while every day.
?I hope some of this information helps you.
MattC2146 OregonAsthma
Posted
Hello OregonAsthma!
Isn’t that funny that people who don’t even know each other can have very similar problems. Like you said my first paragraph was like reading your own life story which in my view is very good cause not only do you understand where I am coming from but you can relate. One day I was jutting sitting own my room playing a random game on the Playstation 4 trying to pass time and then out of nowhere I started getting that breathing issue which at first I was paying no attention to it until about a day and a half later cause it was not going away. Ive had many tests done as well but when I did go and see an ENT doctor he checked my nose and said I did have some blockage due to some deviation and so he wanted to order a CT scan but when the appointment was getting closer I decided to cancel it due to the reason of the cost and even though they will probably find something I won’t be getting surgery cause of school and the cost right now so I decided to hold off but they believe and I believe thats what is possibly causing a “wheezing” sound from my nose. I did see a cardiologist who listened to my heart but that was all he did cause he saw me as a really healthy individual and didn’t feel like there was a need to run so many tests. I know Sleep apnea runs in my family and I have never been tested for that but maybe that is something to look into but I am not sure why that could be causing my symptoms but you never know lol.
Thats weird that you were diagnosed with asthma but they said there was no evidence of a lung disease for you. See its so weird cause I was never diagnosed with asthma but they also never ruled it out. The only reason why I don’t believe I have asthma is due to the reason of my symptoms being persistent constantly throughout the day until I go to bed and Asthma is a condition that has to be triggered and turns into an attack but it can be relieved from medication. The oxygen level for the finger is the same thing for me cause when I first used to use it I had 99-100% levels all the time but recently my levels range from 97-99% and I never seen 100% in a long time.
I am actually planning on looking into the Hiatal hernia but before I set up an appointment with one I was actually planning on setting up an appointment with a Chiropractor cause this is just a thought but since I am a workout guy I am thinking that some of my muscles in my back and chest are really tight which is preventing me from fully expanding my chest and maybe after getting an adjustment it might be a relief to breath better. Kinda like a knot you know? There is a knot but once you untie that knot everything falls back into place (just a thought). The GERD does run in my family and my father recently did have acid reflux but that went out away a while ago. The only reason why I do not believe I have the acid reflux is cause I don’t have any burning feeling.
Honestly friend I am starting to think that this deep breath issue might be a form of anxiety as well but I could very well be wrong. The only reason for my belief in this issue being anxiety is cause I recently found out that on my grandmas side there used to be someone in her family that had severe anxiety that led her to go into the hospital multiple times. Another reason why its hard for me to believe that I am having a lung issue is cause if my breathing problem was COPD related then I wouldn’t be able to workout the way I do so I’m thinking its either anxiety or something very minor that a doctor can’t pinpoint. Same as me this issue never affects my sleep either.
I actually heard of that Vocal Cord dysfunction issue as well and the only reason why I didn’t look into it is cause the ENT doctor didn’t mention it so I guess since he didn’t feel a need for it then I wasn’t going to bring it up. Same with me the pulmonary doctor basically looks at me like I am a waste of time but he is very nice about it. He does not believe my issue is lung related and he had said that before. He also states numerous times that my lungs always sound clear and even forces me to cough which he still never finds anything.
Hey OregonAsthma Thank you so much for responding to my post and I can’t wait to hear back from you!!
azae09 MattC2146
Posted
Nunu1066 MattC2146
Posted
Hi MattC, I just found your old post and was wondering how you were doing now? Whether you'd had any test results that had helped you with a diagnosis? I hope you have, as it sounds like a very frustrating place you're in at the moment.
I was going to suggest, if you haven't already tried this, to go and see a physiotherapist/osteopath/chiropractor who can work with the muscles under your diaphragm to relieve any tension there.
I have asthma and allergies like you and had an upper endoscopy to diagnose my continued stomach pain and sore throat/need to swallow often. They found a small hiatal hernia which can cause reflux flare-ups but also palpitations and for me I think it is also a trigger for migraines as it can irritate the vagus nerve.
When I get bad migraines and vomit lots my stomach at the top of my ribs feels really tight and I feel like I can't take a deep breath (my asthma and allergies are well controlled with a brown preventive inhaler) so I'll go to see my Osteopath who does this muscle stretching trick under my ribs (feels a bit yucky but not too painful). The difference to my whole body afterwards is amazing, it's as if a big knot (like you say) has been undone and I can breathe and stand upright again.
I'd agree with one of the other posters that chewing gum definitely helps with reflux and also soft black licorice. Letting a big piece of licorice slowly melt away in my mouth can really calm down my reflux. My friend was wrongly diagnosed with asthma but later found out it was reflux, as the symptoms can be very similar with the wheezing and coughing.
Anyway, I've gone on a bit too much. But good luck MattC and I do hope you've found things to help you since your last post.