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.
Continued

[CCF-M.D.-MJM]

Hello,

This is a tough on to answer online without reviewing the actual studies.

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 heart rate to the point that it doesn't show on pulse oximetry?

If you blood oxygen is low it will show up on the pulse oximetry accept in rare cirumstances like carbon monoxide poisoning.  If you are hypoxic, high rates generally will increase.  If you pulse ox is normal, your oxygen levels should be fine.


Is likely that the feeling of shortness of breath is related to my heart instead?

If your heart function is fine and your pulmonary blood pressure are fine, it is unlikely to be your heart.  Mixed connective tissue disorders can be associated with pulmonary hypertension and an echocardiogram should pick this up.

Are there other things that can interfere with the oxygen readings?

If your home reading and your doctors reading are both normal, it is probably correct.

I hope this helps.  Good luck and thanks for posting.

[anacyde]

I share some of your issues and I also had shortness of breath problems, sometimes quite severe and frightening.  It seemed to begin with my first pregnancy and worsened with my second.  I saw a cardiologist and a pulmonologist in addition to my GP, and they all found absolutely nothing that would account for these episodes.

What everyone missed was that I had acid reflux, without the burning.  Pregnancy seemed to cause it and/or make it worse because the hormones relax those sphincters that keep the acid down.  I went on Nexium and within days I could breathe again.

I have no idea if this might be an issue, but you might want to ask if every other test is coming back okay and they cannot find an answer otherwise.  I was told acid reflux can affect the lungs to varying degrees.

Congratulations on your pregnancy and I hope you feel better soon!

[myproblem]

Thank you for the suggestion. Actually, just before I was diagnosed with RLD, my Dr. did tell me I might have reflux (caused by esophageal dysmotility, and related to my MCTD). At that point I started taking Prevacid, and it totally got rid of my mid-night coughing and gasping spells. I am not taking it now because of being pregnant, although it is really probably safe enough. This could be part of why I feel worse lately, but even while I was on it, I still had a lot of shortness of breath. I used to be very active. Now I see a commercial on TV of someone running up a flight of stairs, and all I can think of is how out of breath I would be if it were me.

[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 heart rate to the point that it doesn't show on pulse oximetry? Is likely that the feeling of shortness of breath is related to my heart instead? Are there other things that can interfere with the oxygen readings? Any other advice/suggestions would be appreciated.

[peter piper]

I am very sorry for your problems. Of course, I am not a medical professional and not familiar with the problems you describe, but I can attest to pregnancy as I have 4 kiddos. I am very sensitive to feelings that I am not getting enough air. When I am pregnant I often feel as though I cannot get a full breath, especially late in the pregnancy when the baby is the largest. Sometimes I have to lean back as far as possible, breathe deeply and slowly and count - to avoid  a feeling of panic. I would imagine that if you already have some lung/ breathing problems that this sensation would be very difficult to deal with. Even if this is not the case with you right now - realize that when your body is sharing space with the baby later on - it is common to have the feeling that you just cannot get a whole breath of air.
I hope that you find some resolution - and best of luck with your health and pregnancy!

[cmiller]

When I read your list of challenges I was blown away.   Wow, you are an amazing woman.   I was also blown away because virtually every one of the challenges you mentioned I have seen listed in my readings on magnesium difficiency- either as a symptom or complication related.   Holy WOW!!

Here are a few for you to consider...
http://mdheal.org/magnesiu1.htm
Since 1960, Durlach [20] has maintained that chronic Mg deficit is the commonest cause of TS. He divides the symptoms into five categories: (1) central manifestations of emotional lability, breathlessness and hyperventilation, tremor, headache, dizziness, insomnia and asthenia; (2) peripheral manifestations of paresthesia, formication, fasciculation, cramps, radicular pain and poor exercise tolerance; (3) organ-specific functional disorders producing palpitation, chest pain, pallor, diaphoresis, Raynaud's phenomenon, biliary dyskinesia or spastic colon; (4) 'trophic' phenomena with fragility of nails, hair and teeth; (5) acute crises characterized by hyperventilation, syncope, convulsion, carpal-pedal spasm.

I wish I had more of the web sites that list your complications. I'm sure you can notice quite a few in common above.  I think if you search the web for each of your diagnosis with the word magnesium next to it, you will be amazed at how many are associated.

I would find a physician who can test your cellular levels of electrolytes IMMEDIATELY and help you work out a plan for replacement.  This is not done by most allopathic physicians.  I am not a physician, but I am a physiologist.  And I can not figure out how your intracellular levels of ions could possibly be normal given the list of challenges you have described.  This is different from PLASMA levels, which may well be normal.  My guess is, if you get these straightened out, you may not be cured, and you may feel a heck of a lot better.

you can also search wikipedia- that will give you the definitions for most of the conditions listed above.

Good luck and let us know how it works out,

Cmiller