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Al

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I’ve been with this group for a very long time but haven’t been able to keep

up and especially to write, but try to read as much as I can.

Al, I also have breathing problems that eluded diagnosis for a long time. A

very brilliant lung doctor (considered one of the best in the world) wisely

told me that although medicine has come a long way and we continue to know

more and more, the truth is that there is more we don’t know in medicine

that what we know. Putting a definitive diagnosis on breathing problems can

be very difficult and take years, unfortunately.

I currently have a few “partial” diagnosis for breathing problems including

RA causing pulmonary fibrosis (this is a “best guess” dx that all of my

doctors concur with, and I am accepting because to prove would mean a very

invasive surgical procedure I’m at poor risk for and I’m not willing to have

when it won’t change anything). I’m on oxygen 24/7 and have compromised

immune system from auto-immune diseases (RA plus others) and meds (Cytoxan,

prednisone). The weak lungs and compromised immune system make me a prime

target for frequent pneumonia and “frequent hospital day awards” (too bad

they don’t give some sort of bonus for days spent in hospital because I’d

have racked up many).

Bottom line ----- keep looking for the reason for your breathing problems.

If you need to get a second or third or fourth opinion, don’t hesitate. Your

lungs are too precious and breathing too vital to give up without a good

fight. Sometimes a PCP that is a talented diagnostician can zero in on the

diagnosis and the pulmonary folks can confirm it with tests.

Have you had a “walking pulse oximetry” done? I have gotten short of breath

with exertion for about 5 years. In the first year or so my pulse ox always

was 100% until a doctor finally had me walk through the office with a nurse

holding the pulse oximeter. Sure enough my oxygen quickly dropped to the 80’

s.

Do you snore? If so, has anyone ever suggested you might have sleep apnea? I

ask because that can be the cause of a disease that causes shortness of

breath, especially with exertion.

Hope you don’t mind I stuck my nickels worth in, but I’ve been following

your posts with great interest since lungs are one of my weak points too.

Elaine in Vegas

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