Breathing problems, but very confused

[myproblem]

I am a 30 year old female. Last year I was diagnosed with RLD (Restrictive Lung Disease), after an 11 year mis-diagnosis of Asthma. I also have MCTD (Mixed Connective Tissue Disease). The RLD is part of this, as well as MVP (Mitral Valve Prolapse). Other elements of the MCTD include Arthritis, Raynaud's Phenomenon, Vasculitis, and skin problems similar to discoid Lupus. My lung volume is about 40% less than predicted, and I often feel short of breath. I went to a pulmonologist, but he thought I was a hypochondriac since I don't "look" like I have an autoimmune disease, and my oxygen levels are usually around 97% (by finger pulse oximetry). I feel out of breath upon exertion, but also sometimes while doing nothing. I sometimes have chest pains, which I have always felt came from my lungs/airways. I also feel irregular heart rhythms at times, but had an ECHO to evaluate this, and re-examine my MVP last fall, and nothing unusual was found. I am currently 18 weeks pregnant, and the breathing trouble is really getting to me now. I bought my own pulse oximeter to monitor my levels at home since I disagreed with the pulmonologist. He told me that the shortness of breath must just be a "sensation" I was having, as if it were not real. And told me if I wanted to I could continue using Albuterol for it, even though 2 sets of Pulmonary Function Tests showed that it had no effect at all.
Here's the confusion, even when I feel out of breath, and am actually breathing loudly, and heavily, my oxygen level is coming up over 95%. I do find that my pulse runs a bit high.
cont'd

[myproblem]

Thank you. I posted on other forums as well, but your information was the most helpful, and I will definately try the exercise test. Having my machine checked against a professional's is a great idea. Have a great weekend.

[Demiguise]

Not sure how much help I can be but may have some suggestions.
I'm familiar w/ all you've been going through & your conditions.
I can see why things are hard to narrow down. Being pregnant
keeps you from getting certain tests/meds. Maybe start w/ reg-
MD & have a lab work-up again if not lately. Impress upon them
that you want to test blood measurment of 'ratio of amount of
carbon dioxide to oxygen'. You can add a few other goodies you
are familiar with. Then take oximeter to a hospital out-pt or
clinic & calibrate yours against theres. Hard to say if you're hyperventilating from excertion which can be tested breathing
into a bag abt 10 times to get monoxide & feel better or if
vasculitis or muscles are a problem. You have some serious stuff
as I recall. I have to say that RLD dx'd bothers me since it's been known to be a cop-out for 'I dunno' except 'restricted lung
volume' doesn't sound big, yet that's what you have. I have a
friend w/ Sarcoidosis that went un-dx'd for yrs. Had night sweat
& chest pain sometimes doing very little & out of breath. I know
the way she was helped initially & helped for RLD. You wear the
portable oximeter & excercise while 'some one else' watches the
oximeter. Don't know the amt. of time needed. A sudden fall to
90% means patient needs supplemental oxygen. This test is a
'de-saturation' test. Her normal pulse went to 99 w/ RLD. After
chest pains started overtime, more tests were run & Sarcoidosis
was the proven result. You have many things that could be
effecting the out of breath. You're obviously huffing if you
have vasculitis or flow problems to muscle tissue. I know a skin
condition was present & they confirmed her illness by a biopsy
of one of the spots. Maybe you need supplemental oxygen off/on.
After baby, then you can get other tests. Your little bundle is
also causing some body stress. I did a trial of oxygen after
surgery to get lung expansion going & brain function increased
faster. Might be worth a shot. I wish you well.

[crystaly]

Really sorry to her you have more problems obviously theres something going on somewhere. I don't know a great deal medically but I know when I had a problem with my diaphragm going into permanent spasm my blood oxygen was up and down like a yoyo. Regarding pulse rates I thingk they can vary a great deal depending on what your doing and how you are feeling if you know what I mean. Sorry I can't be of much help to you really but I know someone else will reply and may have better ideas. Hope you find something which relieves your problem. Let us know will you. XXXChris

[myproblem]

My pulse is seldom lower than 90, and goes up to about 112 or more at times. It frequently jumps or drops 10-15 points in seconds, and then changes again a few seconds later. I am a small person, 4'10", and 115 lbs. pre-pregnancy. I know that size does affect pulse, but does anyone else feel it is common to have such jumps in rate? Is it possible to have a "real" breathing problem, and have your body compensate for it with heartrate to the point that it doesn't show on pulse oximetry? Are there other things that can interfere with the oxygen readings? Any other advice/suggestions would be appreciated.