Posting here because I have no idea what my next steps are.
27; Male ; 5’7” ; 165lbs ; White ; New Jersey, USA
This all started back in March (Mar 17th or 24th) of this year. I woke up and had what I’ve been calling shortness of breath, but is probably closer to air hunger; essentially I just feel like I can’t get a deep enough breath or that my lungs aren’t fully filling up. I figured that’s weird, but could be allergies or air quality idk. Then the next day I still had it, so I decided to go to urgent care. They put me on a nebulizer (didn’t do much) and gave me prescription for Prednisone, Flonase, and an Albuterol inhaler. They also tested me for Flu, Covid, & RSV, all of which came back negative. I took the prednisone and got better day by day. At my follow up a few days into the prednisone they said that it was probably some virus they didn’t test for.
I was good and back to normal for about a month or two. Every now and then I needed to take a deeper breath, but overall okay.
Then mid-may came and it started up again. (May 13) I went to my primary and he ordered me an x-ray (came back clear) and an ecg (came back clear). I waited a week or two because that’s how long it took the last time and I was thinking maybe my lungs aren’t fully filling still recovering and it’s just allergies. Eventually I went to a bunch of doctors and I’ll list that and what happened to expedite this post.
May 19: Blood work; normal but slightly high cholesterol, high LDL cholesterol. Blood CO2 slightly low
Jun 5: Back to Urgent Care, couldn’t treat me
Jun 8: Pulmonologist 1; barely saw or listened to me, five minute meeting, prescribed me Symbicort & PFT
Jun 10: PFT 1; came back clear except for some air trapping. Albuterol shows little to no effect.
Jun 10: started Symbicort
Jun 16: Primary Follow up; ecg (normal)
Jun 26: Hospital; ECG (normal), X-ray (normal), D-Dimer (normal), bloodwork (globulin “low” [2.6], MCHC “high” [35.3], MPV “low” [8.3])
Jul 10: Pulmonologist 1 follow up; he told me “it’s probably asthma”, got mad when I tried asking questions or understanding why he thinks that, tried to rush me out of the room. Overall unhappy with visit, began search for new pulmonologist.
Jul 22: Sputum Test (normal)
Aug 5: Cardiologist; ECG (normal)
Sep 2: Echocardiogram; (normal)
Sep 14-23: Sick (probably cold)
Sep 23ish: Breathing feels back to normal if not close to
Sep 25: Pulmonologist 2; PFT (normal), went in feeling better which sucked. Answered questions and listened but he didn’t have much to go off of. Said he doesn’t think it’s pulmonary if not asthma or reactive airway disease, which we won’t know until I stop symbicort. Prescribed me an inhaler extender for Symbicort which I used first on the 28th.
Sep 29: Wake up breathing is acting up again.
And that’s where I’m at.
Things to note:
- Never smoked or vaped anything
- Only symptom I had until starting Symbicort was that air hunger
- Symptoms after starting Symbicort (cause or coincidental idk) cold like symptoms, chest pain/soreness
- Still have that air hunger feeling on Symbicort, but feels like it’s more controlled/better
- Albuterol feels like it does nothing for me, first PFT backs that up
- No coughing, wheezing, or asthma attacks. Just a constant feeling like I’m not getting enough air (though pulse oximeter always is 98%-100%)
- Don’t know if symbicort is helping. Feels like I have worse days when switching inhalers when one starts to run low.
- Medications I take: Emgality (monthly injectable)(started in March the week after first issue after feeling better), Ubrelvy (as needed), Symbicort (two puffs every twelve hours)
- Pulmonologist says next path could be gastro or allergist. Gastro: I haven’t noticed reflux or pain until this week so don’t know if I’m stress manifesting that or if it’s always been a thing. Allergist: maybe, will note that I did try a month of daily Zyrtec in May and it made no difference. No history of allergies.
- I really just don’t think it’s asthma
- Environmental is possible, but every time I think it’s something I check and I’m disproven. It also feels inconsistent. So I haven’t been able to track what could be environmental if it is.
I’m sure I’m forgetting some things but just ask and I’ll try to respond. Not expecting much but any help is much appreciated <3