Discussions By Condition: I cannot get a diagnosis.

Shortness of breath, lots of tests, no answers, Help!

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Amayae
  • May 10, 2011
  • 07:34 PM

I am a 20-year-old female who suddenly developed shortness of breath six months ago. Basically, one morning I woke up and I couldn’t do most activities without getting short of breath. Prior to this I was a college student taking a karate class two days a week and walking everywhere I needed to go. Afterwards, I could not walk at a slow pace for more than ten minutes without getting short of breath or read a textbook for more than five minutes without the same thing happening. Basically, after a certain amount of very simple exertion, I feel short of breath. When I get short of breath, it also becomes hard to think clearly and sometimes I have pain in my chest when it gets really bad. It goes away very quickly after I lie down or stop doing the activity. While lying down, shortness of breath does not present itself at all.



This condition has been exactly the same for the past six months and although I take walks every day, my endurance does not go up. The shortness of breath and inability to think clearly are so bad that I have had to drop out of college and return home to have my parents take care of me.


In the space of the last six months I have had multiple chest x-rays, multiple EKGs, blood tests, a CT lung scan, multiple spirometry tests, two echocardiograms, a VQ lung scan, an ENT throat exam, a heart catheterization, a heart shunt study, a “bubble” test, allergy tests, a heavy metal urinalysis, an asthma test, a neurologist tested muscle function test, my lungs tested with exercise and an arterial line, genetic blood testing, an MRI or my head and neck, a sniff test, an EMG test, an echo of my diaphragm, an exercise test, and a muscle biopsy.
All of those tests came back normal with the exception of the second exercise test which showed my VO2 level to be much lower than it should have been (58%). I do not have asthma and I am mildly allergic to oak trees and certain types of mold. Two months prior to getting sick, I had moved to Utah to attend school, but I normally live in North Carolina, which I moved back to two weeks after getting sick. I had also been in Utah the previous year for school.



I have never smoked, used drugs, or drunk alcohol. I was not exposed to smoking often either now or as a child.



There is no family history of anything similar to what I have. I am normal weight for my height and do not have diabetes. Prior to getting sick, there had been a few times when I found it hard to breathe when I was under physical and mental stress in the two months before, but each time it went away quickly after lying down and did not return. At the time, it was thought that I had adult-onset asthma, but that has since been proven false.


If anyone has any idea what this could be, at all, I would be very grateful to hear it. I would love to hear from anyone going through anything similar as well. Thanks.

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6 Replies:

  • I am a 20-year-old female who suddenly developed shortness of breath six months ago. Basically, one morning I woke up and I couldn’t do most activities without getting short of breath. Prior to this I was a college student taking a karate class two days a week and walking everywhere I needed to go. Afterwards, I could not walk at a slow pace for more than ten minutes without getting short of breath or read a textbook for more than five minutes without the same thing happening. Basically, after a certain amount of very simple exertion, I feel short of breath. When I get short of breath, it also becomes hard to think clearly and sometimes I have pain in my chest when it gets really bad. It goes away very quickly after I lie down or stop doing the activity. While lying down, shortness of breath does not present itself at all. This condition has been exactly the same for the past six months and although I take walks every day, my endurance does not go up. The shortness of breath and inability to think clearly are so bad that I have had to drop out of college and return home to have my parents take care of me. In the space of the last six months I have had multiple chest x-rays, multiple EKGs, blood tests, a CT lung scan, multiple spirometry tests, two echocardiograms, a VQ lung scan, an ENT throat exam, a heart catheterization, a heart shunt study, a “bubble” test, allergy tests, a heavy metal urinalysis, an asthma test, a neurologist tested muscle function test, my lungs tested with exercise and an arterial line, genetic blood testing, an MRI or my head and neck, a sniff test, an EMG test, an echo of my diaphragm, an exercise test, and a muscle biopsy. All of those tests came back normal with the exception of the second exercise test which showed my VO2 level to be much lower than it should have been (58%). I do not have asthma and I am mildly allergic to oak trees and certain types of mold. Two months prior to getting sick, I had moved to Utah to attend school, but I normally live in North Carolina, which I moved back to two weeks after getting sick. I had also been in Utah the previous year for school. I have never smoked, used drugs, or drunk alcohol. I was not exposed to smoking often either now or as a child. There is no family history of anything similar to what I have. I am normal weight for my height and do not have diabetes. Prior to getting sick, there had been a few times when I found it hard to breathe when I was under physical and mental stress in the two months before, but each time it went away quickly after lying down and did not return. At the time, it was thought that I had adult-onset asthma, but that has since been proven false. If anyone has any idea what this could be, at all, I would be very grateful to hear it. I would love to hear from anyone going through anything similar as well. Thanks. Hi, I am 28years old and about a week ago i had the same thing happen. I could walk a mile and now i cant walk accross the room without lossing my breath. All of my vitals are fine and ive had a ct scan of my chest, echo, chest xray and an athma breathing lung test. they are all fine. The only thing that they found was that im low on iron.If you have figured out what is wrong please post. thanks
    mharvey 1 Replies Flag this Response
  • mharvey, have you been tested for anemia? This has come up on my search for a diagnosis and might fit your case. It involves having low iron and can cause shortness of breath. A CBC (complete blood count) test can test for it. I hope this helps.
    Amayae 1 Replies Flag this Response
  • Hi Amayae.. Im no doctor and I could be wrong but I would assume that the symptom of shortness of breath if its to do with iron deficiency being a deficiency issue, wouldnt be relieved by laying down. I do thou have another possible answer for you. "Prior to getting sick, there had been a few times when I found it hard to breathe when I was under physical and mental stress in the two months before, but each time it went away quickly after lying down" "It goes away very quickly after I lie down or stop doing the activity. While lying down, shortness of breath does not present itself at all. " Firsty your condition or at least part of it is a postural otherwise known as "orthostatic" problem seeing it goes away with laying down. So I you need to be looking at "orthostatic" conditions so that rules out a lot of things. Orthostatic means related to being upright.......... I know there is at least one heart condition which is an orthostatic one but in that I think its the other way around where being upright helps and if you had a heart issue and see a cardiologist which it sounds like you would of done with those tests, they should of picked that up .... so Im thinking you need to look in another direction and due to your symptoms Im thinking it may be an autonomic nervous system issue (unfortunately autonomic issues are something most doctors dont know about). *Note.. Ive found that most neurolgists arent good at diagnosing ANS issues. Im thinking you possibly may have Postural Orthostatic Tachycardia Syndrome (POTS) *Note heart doctors miss this as it isnt a heart issue as such but autonomic issue. The Tachycardia happens with postural shifts and hence isnt noticed unless the CORRECT tests for this disorder are done. "POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. " POTS patients get POTS symptoms of which shortness of breath is one POTS symptom (27% of POTS patients have that symptom with their POTS). Many only get POTS symptoms when upright. Your case has me thinking of POTS as POTS symptoms are relieved and often quickly when laying down. POTS affects the brain due to the lack of blood flow going to it when upright.. hence hard to think clearly. 24 hr heart tests will not pick up the tachycardia in POTS and the doctors on reading the 24hr heart test results will think the increased heart rate changes at times are due to you exercising more at the time, so wont know the heart has abnormally quickly upped to try to adjust to standing. The only way to tell if you have POTS or not.. is throu "Tilt Table testing" and if you get symptoms with that bringing on tachycardia or not. So seek out a hospital which does Tilt Table testing to get possible POTS ruled in or out in your case. (you may need an autonomic specialist who is familar with POTS. POTS can be triggered by physical stress too .. over mental stimulation and stress may make POTS worst best luck http://www.dinet.org/symptoms.htm (I'll follow this up with a second post.. this one is getting to long.
    taniaaust1 2267 Replies Flag this Response
  • "All of those tests came back normal with the exception of the second exercise test which showed my VO2 level to be much lower than it should have been (58%). " Ive done some research as I was worried you may of been developing slow onset ME/CFS as POTS can coexist with it and nearly all ME/CFS patients have POTS and I knew that ME/CFS patients have a low V02 max. POTS can often be treated where as ME/CFS cant be well at all. anyway.. when trying to find if low V02 can be a part of the symptoms of one who ONLY has POTS by itself and not part of coexisting ME.. I found the following "Research has demonstrated that low blood volume ‘almost certainly’ occurs in a subset of CFS and POTS patients (Stewart 2003a). A trend toward low blood volume is associated with reduced low VO2 max in CFS patients (Farquhar et. al. 2002). ... As i said in other post.. POTS patients normally have low blood volume as part of the condition which can cause symptoms.. so by studies that low blood volume is responsible for low V02 max. So it all fits and I think you may only have POTS :) (but do take care in case im wrong and your condition shifts into ME.. do not over do things) Many POTS patients can often be helped by beta blockers and other POTS treatment (salt and lots of fluids).
    taniaaust1 2267 Replies Flag this Response
  • I am not a registered user but I felt the need to share my story. I was perfectly healthy until May 6, 2011. I must have breathed in some mold at our cottage and I developed Hypersensitivity Pneumonitis. My oxygen level was below 90% and I was hopitalized and treated for 9 days. I did feel a little better but as of today July 8, 2011 I still get short of breath during any physical activity which is relieved by laying down flat on my back. I started to think there might be something wrong with my heart, so I googled my symptoms and found a rare syndrome that sounds exactly what I am experiencing it is called Platypnea-Orthodeoxia. My family physician has refered me to a cardiologist to be tested for this on Aug. 31, 2011.
    Anonymous 42789 Replies Flag this Response
  • Shortness of breath which is relieved when lying down, and low oxygen levels in the blood are a relatively common symptom of liver disease. It's called hepatopulminary syndrome. If anyone has these symptoms get a liver function blood test done and a liver scan.
    band-medal 1 Replies
    • September 27, 2013
    • 11:18 PM
    • 0
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