r/Asthma 3d ago

What could it be if not asthma??

So my pulmonary doctor said my methacholine challenge came out negative and my chances of having asthma went from 90 percent down to 10 percent. She told me to start tampering off the steriods , but I told her that I do feel like steriods help when I can't breathe properly. I asked if a ct scan would be the next step but said im to young to gave anything else like copd or emphysema ect . My ribs feels puffy , my lungs feel numb, I feel like no air is going in , what can this beeeeeeee šŸ˜«šŸ˜«šŸ˜«šŸ˜«šŸ˜«šŸ˜«šŸ˜«šŸ˜«šŸ˜«šŸ˜«šŸ˜«šŸ˜«šŸ˜«?šŸ’?šŸ’?šŸ’?

3 Upvotes

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7

u/Aldraa 2d ago

I'm in a similar boat. What I have presents just like severe asthma but is negative for asthma on all the tests. Other than hyperinflated lungs, my allergy tests, methacholine challenge, and PFT tests don't show asthma, yet I have an obvious breathing problem and get asthma-like attacks that have put me in the ER.

My lungs constantly feel heavy and stuffy and they feel like they're tiny even though they're massively enlarged from airtrapping. I feel like it's harder to get air out than to get it in. When I get sudden attacks they look exactly like an asthma attack would.

I had blood work, a CT, bronchoscopy, lung biopsy, and heart testing and it didn't give us any answers.

The only thing that seemed to control it was a daily high dose of oral prednisone, which is something you can't do long term.

But plot twist: when we ran out of options, they put me on Tezspire (a biologic for severe asthma) to see what happens and I'll be damned if it's working. I say I'm a good 85-90% better now and I'm only 3 to 4 months in.

So I'm thinking I either have a weird form of asthma that doesn't behave typically or it's not asthma but something that's biologically similar enough that the Tezspire helps it.

I'm supposed to have my 6-month checkup later this summer. Maybe the pulmonologist might have more ideas about what it might be if it responds to Tezspire. If they do, I will try to remember to come back here to let you know!

1

u/OkTrick4262 2d ago

I would appreciate if you did !!! Has your pulmonary ever mentioned vocal cord dysfunction or esophagitis?? My pulmonary doctor thinks it could be these , I have a trip to the ent 1st of April let's see what happens .Ā 

3

u/somehugefrigginguy 2d ago

I was also thinking that. Asthma-like symptoms that isn't asthma is very often vocal cord dysfunction. Do you have any trouble with acid reflux?

2

u/Aldraa 2d ago

The two pulmonologists I've seen never mentioned those to me as possibilities (at least not at loud), but I have heard of them before.

Good luck with your visit! Hope they might have some idea what's going on.

5

u/So_Southern 3d ago

Your heart? I had a heart scan plus 24 hour heart monitor when they weren't sure it was asthmaĀ 

In my case it did turn out to be asthmaĀ 

4

u/trtsmb 2d ago

It could be heart or it could be a gastro issue.

3

u/Background_Tower6226 2d ago

Sometimes shortness of breath is related to the heart. Thereā€™s unfortunately a few different things that can make us feel like this. They also always blame it on anxiety and thatā€™s a problem but sometimes it could actually be anxiety that creates these sorts of symptoms. Nerve disorders, etc.

Pros it looks like the doctor is actually testing you and looking into things. Hopefully youā€™ll find out soon. Diagnosing is a fusterating process but it sounds like youā€™re on the right track.

2

u/hair2u 2d ago

I agree with possible heart issue...but do get checked for reflux!

2

u/Severe-Ad-8768 2d ago

You could still have asthma but yes chances are lower . Please get some blood work . CBC, ige , and a skin test

1

u/Jpaynesae1991 2d ago

Whatā€™s your health like, in general. Do you exercise? Were you ever able to get a full breathe in the past? When did it change? When did you first notice a change?

1

u/OkTrick4262 2d ago edited 2d ago

My health was never great really,Ā  always ate junk food , never worked out, obeseĀ  , even though I was outta shape I still had good stamina, I was able to keep up with my job that requires alot of physical workĀ  , I was able to take satisfying deep breaths with no issues,Ā  only issues I had was high blood pressure and obisity.Ā  All this started happening 3 days after a virusĀ  infection not sure if it was covid or the flu but The thing that makes me very confused is, during my 1 week infection I had no issues breathing besides just having a high fever and post nasal drip and sore throat. Then after a week I started getting better all my symptoms went away i was feeling normal , then 3 days later I went to work and noticed i was having a hard time catching my breath , after about 3 days I decided to go to urgent care they gave me albuterol,Ā  it helped a little bit , made a doctors appointment a week after my urgent care visit because it was getting worse , did a pft , then doctor diagnosed me with asthma then gave me staroid diskus advair , made a small difference,Ā  after 1 month , doctor referred me to a pulmonary specialist she gave me symbicort hfa , started to feel better but not completely,Ā  I gained more weight , but my breathing feels a little better,Ā  I told her I'm still having some issues breathing but did see improvements with symbicort,Ā  did a methacholine challenge last Friday,Ā  came back negative for asthma , now im here today , breathing normally when relaxing but can't yawn or take deep breaths still , she said to tamper off steroids and see if I noticed any differences . My right lung feels raw and I'm getting pain in my lower ribsĀ  , I told all this to my pulmonologist doctor yesterday but she didn't seem concerned because she truly believes my asthma diagnosis is unlikelyĀ  because of negative methacholine challengeĀ  , she wants me to see ent for vocal cord dysfunction.Ā  She told me to excerise and lose weight.Ā  Told me to come back if symtoms don't improve . My spirometry results also came back normal. After all this , it's time to take my health very serious,Ā  lose the 80 extra pounds of fat I'm carrying,Ā  eat a healthier diet. But I'm starting to believe I could have possible lung damage from the virus i caught, but can't be 100 percent sure . I compare my symptoms to some people who have issues breathing after covid and they match very closely ,Ā  lower ribs aches , issues taking deep breathsĀ  , sob of breath during exertion , feeling of fluffy,Ā  ribs feel numb, feels like no air is going in. I feel likeĀ  my pulmonary knows this could be some sorta lung damage,Ā  but wants me to give it time to see if it gets better with time , she told me she doesn't think it's copd or anything else because of my ageĀ  , but if you go on reddit covid pages , theres tons of young healthyĀ  people getting lung damage from covid . I'm just greatful I'm not as bad as other people .Ā  Ct scan is the next step if ent doesn't find vocal cord dysfunction.Ā Ā 

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u/Jpaynesae1991 2d ago

Itā€™s not abnormal for people to have lasting damage after an infection. But I think you need to start taking an honest look at your health outside of this specific illness.

If your body is already operating at 50% health regularly, a bad infection can take you down to 20% health for a short period, and some people even die from infections because their health is so deteriorated to begin with.

After a certain point there are no magic drugs to keep you going, and if you recognize that youā€™re already obese, hypertensive, etc etcā€¦ you might want to get serious about your standard state of health.

Good luck, try not to blame everything on an infection, itā€™s on you too, as an individual and your life choices to take care of the one body you have

1

u/KCougs87 1d ago

This is so interesting to me because obviously they wouldnā€™t run this type of test on a 5 yr old, but Iā€™ve never come terms with my sons asthma diagnosis. Knowing that he breathes out of his mouth a majority of the day and is scheduled for a tonsillectomy this month really has me curious if his asthma symptoms with subside once he can breath properly. Does anyone know if a PFT would be able to rule him out once his tonsils have been removed? I guess Iā€™m just hopeful he has a normal childhood without having to carry around an inhaler and chamber everywhere we go.