Please help

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For the past yr ive had a burning in my left lung and its felt inflated. I have copd but all the drs kept saying my xrays looked good, and breathing test was in good range. 2 months ago i began having vascular problems. 1st they suspected vasculitis, then a blocked artery, or blood clot. After tons of testing we havent found anything. I have been passing out, turning pail, cold 'streaks' going threw me all the time, blood pooling in legs, no veins will dialate. the oxometer says 100% oxygen, chest xrays look ok. my dr just prescribed 2 inhailers for me and im starting to see veins again, no more passing out. Its not cleared up by a long shot but im actually seeing progress and have some hope that i may not die at 35yrs old from some unknown cause.I have a mra test coming up this week for a scan on the vascular system but now im thinking that this has been oxygen deprivation in the vascular system (somehow). Does anyone know what is happening here?!? I have a 2yr old baby that needs me and ive been basically bed ridden and dying for 2 months while all the testing comes back good, so i cant get the care i need. If this is the copd, why would a chest xray look ok? Why only one lung? Why does the oxometer say 100% o2? Any help would mean the world to me. I dont know where to turn anymore... thank you

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8 Replies

  • Posted

    You need to speak with your Dr. and ask him/her the questions you have about

    your health.  Insist on getting every question answered, don't leave until you

    feel that you know what is going on with you.  Sure that you will get answers from

    people on this forum, just keep in mind that none of us are doctors.  Good luck.

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    • Posted

      Yes i hear you. I have been that way with the drs. Im hoping someone else has experienced this or has an idea of whats going on. Thank you for your reply
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  • Posted

    Burning in the lungs from my own experience is what I call lung inflammation, but often when the doctors listen to my lungs in this situation they hear crackling and a lung infection is diagnosed for this I am prescribed prednisolone (for the inflammation) and anti biotics for any infection.l

    I said to my respiratory nurse I often only have the inflammed burning lung symptom when I get a 'lung infection'  the respiratory nurse then tol me I may just need to take the prednisolone in these circumstances.  However that is what I have been told and what you are experience will need guidance by your own medical professionals.

    Is the oximeter your own that you are checking on?  If so it could be inaccurate, certain things affect it and the readings may not be accurage.  These things can be check on a PR course, or check your oximeter against one used by a medical professional.

    If your blood oxygen checked by a medical professionals oximeter registers 100% its unlikely you will be referred for a arteriel blood gas check.  So with confirmed blood oxygen at 100% you will not be prescribed oxygen.  100% oxygen saturation means you have optimal blood oxygen saturation, exceptionally good in other words.

    Xrays can come back good - meaning you don't have a lung infection,  emphysema in my case didn't show on ordinary xrays but lung infections do.   

    I think you need to get the mra scan done, the vascular tests, venus return checks, CT scan.  Barium meal etc etc.  there are loads that can be done to determin what the problem is, its a question of going through them all to find out what the problem is or is not.

    What is blood pooling in the legs???  Do you mean excessive bruising?  Assuming you are communicating all of the symptoms you have mentioned here to the medical professionals, as these will help them arrive at possible causes and diagnosis.  We can diagnose or advise what is wrong in your case but your doctors can with a process of tests.

    Perhaps you need to wait and see what your diagnosis is before getting any comparisons of those already diagnosed and of course if your diagnosis is not a lung issue then it would inadvisable for you to seek advice and comparisons from those have lung issues and this could well steer in an entirely incorrect direction.

    Before medication are prescribed usually there has to be a diagnosis in order for the correct treatment to be prescribed.

    Best wishes for your test results.

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    • Posted

      corrections to the above WE cannot diagnose or advise what is wrong in your case.....
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  • Posted

    Amended content:

    Burning in the lungs from my own experience is what I call lung inflammation, but often when the doctors listen to my lungs in this situation they hear crackling and a lung infection is diagnosed for this I am prescribed prednisolone (for the inflammation) and anti biotics for any infection.

    I said to my respiratory nurse I often only have the inflammed burning lung symptom when I get a 'lung infection'  the respiratory nurse then told me I may just need to take the prednisolone in these circumstances.  However that is what I have been told and what you are experiencing will need guidance by your own medical professionals.

    Is the oximeter your own that you are checking on?  If so it could be inaccurate, certain things affect oximeters and the readings may not be accurate.  These things are usually checked as part of the PR course, you can check your oximeter against one used by a medical professional to be sure of its accuracy.

    If your blood oxygen checked by a medical professionals oximeter registers 100% its unlikely you will be referred for a arteriel blood gas check.  So with confirmed blood oxygen at 100% you will not be prescribed oxygen.  100% oxygen saturation means you have optimal blood oxygen saturation, exceptionally good in other words.

    Xrays can come back good - meaning you don't have a lung infection, or shadows on the lungs,  emphysema in my case didn't show on ordinary xrays but lung infections do.   In my case emphysema was diagnosed after a CT scan. 

    I think you need to get the mra scan done, the vascular tests, venus return checks, CT scan.  Barium meal etc etc.  there are loads of tests that can be done to determine what the problem is, its a question of going through them all to find out what the problem is or is not.

    What is blood pooling in the legs???  Do you mean excessive bruising?  Assuming you are communicating all of the symptoms you have mentioned here to the medical professionals, as these will help them arrive at possible causes and result in tests leading toward a diagnosis.  We cannot diagnose or advise what is wrong in your case but your doctors can with a process of tests.

    Perhaps you need to wait and see what your diagnosis is before getting any comparisons of those already diagnosed.  If your diagnosis is not a lung issue then it would be inadvisable for you to seek advice and comparisons from those have diagnosed lung issues as this could well steer you in an entirely incorrect direction.

    There has to be a diagnosis first before the correct treatment / medication can  be prescribed.

    Best wishes for your test results.

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    • Posted

      Good advise VEE2....I had to go back and let her know you were correct.  Thanks for the time you put in on this site.  Regards, Breathless
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  • Posted

    Where are you living, U.S., Europe, or UK.  I would suggest that you see a cardiologist or vascular cardiologist to be more specific....I have not heard of any of these problems associated with COPD./Emphysema etc.  If your chest is burning something is wrong, and I would make dang sure they did a MRI with contrast, and possibly a saline wash to see what in the world is going on.  If you pulse ox levels are normal then something else is going on.  I will say a prayer for you but by all means, don't take just one doctors opinion (remember they are only practicing medicine)   get yourself to a specialist.  And demand that they do something to find out what is wrong with you.  On this end, I am certain the group will send up plenty of prayers and we will continue to check on you.  Keep us posted as to what they tell you.  Breathless but grateful to be breathing.

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    • Posted

      As a second thought, I just read what VEE had written, I have to agree with her. this could be something entirely different and we certainly don't want to steer you in the wrong direction.  Like she said.  Demand they give you the answers you need.  Just give them a Mexican Standoff and don't leave until they have done as you have asked and obviously paid for....then go forward.  Keep us posted.

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