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Why can't we get a diagnosis for 24 year old daughter with breathing problems?

My daughter has had breathing problems for the last 5 years. We have been to 50+ drs, Mayo clinic, naturopaths, acupuncture & NO ONE can seem to diagnose her. At one point, she was on 25 mg prednisone daily & on oxygen 24/7. We started seeing the naturopath & she got off the oxygen & meds. However, after about 1 year, she started going backwards & nothing she did helped. PLEASE help, as she cannot function as a normal 24 year old young woman anymore. Has trouble getting a breath in. Has been tested for everything EXCEPT what the answer is, obviously. (Been tested for asthma, RA, Lymes, Interstitial lung disease, and everything you can imagine!)
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Avatar universal
Okay, so firstly let me explain that alveoli cannot habe small hole without collapsing... the mechanisms of breathing requires your transmural and tranplueral cavities to become more negative then atm to be able to inhale.  Think about it like a ballon, your not opening the balloon by inhaling, you actually flating it with negative  pressure.

1. Has she and other here been evaluated for pulmonary vascular and cardiac conditions?

If not i recommend the following...


Spet v/q
exercise right heart cath
Cardiac mri

I have been through the ringer the past 3.5 years.   I know how tough this is.  I have had pe's misdiagnosed, an asd missed and another l to r shunt, that hopefully can be closed.

I was a medical professional and am now a professional patient.  If there is anyway I can help by answering more questions or explaing details please pm me.

Trust your gut, and dont let md's tell you your fine when you know you are not.  

Blessing to you all!!
Helpful - 0
Avatar universal
Hi,

I read this since I am chatting with NanonsHealth. I too am really sorry for your daughters situation. I wish her all luck in the world. And I read she has been tested thoroughly without finding the cause.

The other day i read about a football player suddenly getting sick from something called pneumothorax, or collapsed lung, him having to rest for a long time until the lung is back to normal size again.

What would happen is that air leaks from tiny holes in the alveoli to the surrounding lung sack, causing the lung to not work properly since the opposing gas pressure in the lung sack prevents the lung to expand properly. I imagine this would feel something like not being able to catch a deep breath. However, I don't know if this condition comes in different difficulties or only as an acute thing. If there is a mild and slow form i don't know. Besides, they have probably already checked her for this.

Please tell her I wish her the best of luck.

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2 Comments
She has had countless chest xrays, ct scans, breathing tests... SO many tests, so I am sure that would have shown there, but thanks for your comment! Hopefully someone will read this & be able to point us in the right direction!
Yes, that is probably outruled and thought of. Hope someone has an answer.
Avatar universal
Hello Frizzle, I am so sympathetic and understanding of what your daughter is going through because I myself am 27, and am having major issues in trouble breathing with doctors already giving up in my predicament. You say your daughter has been having trouble breathing, what is this sensation like? Is it shortness of breath as if she can't get a full breath and only a percentage of her lungs are being used? Is her chest tight on certain areas or across the board? When she breathes in, does it feel like she is breathing through a straw? Is she manually breathing without purposely trying too? I only ask these questions because a lot of them relate to how I feel, and I can only list things off on what your daughter may have; Chemical pneumonia, reactive airway disease, and IPF are some things that popped into my mind, but I'm unsure of whether or not your daughter has already been tested for things such as these. Just shooting spitballs here but I don't think inflammation in the lungs can be seen by an xray test, so I'm wondering if she may have some kind of idiopathic inflammation and the doctors just can't find it with their testing.

I honestly don't know if this post has really given you any information you don't already know, I just want you to know I am sort of in the same boat and it always makes me upset to hear someone in so much pain. I wouldn't wish chronic pain on anyone, it is a nightmare.
Helpful - 0
3 Comments
Thank you so much for your response. She said it feels like she just can't get a 'full' breath. Sounds like you have something similar, so that will probably make sense. Read up on everything you said. Don't think anyone has ever mentioned the IPF, so going to check on that one. She has seen several pulmonologists, as well as allergists and many others. Even took her to Mayo clinic & that was a waste. Since she is so young (as I'm sure you have discovered) if they can't find anything, they just want to say she is depressed. Of COURSE she is depressed! She is 23 & has been sick for 5 years. BUT, that is NOT the problem. SO frustrating! Thank you for your response & pray that you will get some answers as well! Please let us know if you find anything out & we will as well!
You are absolutely correct that the depression is obvious as to why. It feels as though doctors paychecks come first, and helping someone is just a bonus. It saddens me to hear that you had a very poor experience with the Mayo Clinic. If I may suggest, ask her to go into more detail about a full breath. I know it sounds as if I am being repetitive, but I too suffer shortness and I believe a partial cause of this is due to my airways in the nose. Like written above, it feels as though my lungs are only utilizing a percentage instead of the entirety. I sincerely hope you find answers, it feels as though it's ta journey on a very long road.
thanks for your comment. The only depression she has is from being sick for so long & not being able to find out what's wrong. It's not with her nose, but she just feels like she cannot take a deep breath (or that there's more 'room' in her lungs, but she cannot inhale all the way)
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