In the two years since I got this, I have also had periods of shortness of breath and coughing. It happens most often when I feel “hot” after walking a longer distance than usual (which unfortunately still is not far) or when trying to hurry (such as when going to work). I feel “wheezy” and it is really hard to breath although my oxygen level is okay. An albuterol (asthma) inhaler helps a lot. I may be unfortunate enough to have gotten asthma in this same time span, but since it is only associated with times that I feel worse or have done more, I wonder if it is part of this neurologic process?
Anyway, the reason to say this is that it might be worth checking to see if your doctor thinks that a trial of an albuterol inhaler might be worthwhile.
The other thing for you and Ken/Kedaso is to see if it might be worth doing pulmonary function tests. At the hospital I work there are specific tests for neurologic conditions–that look at the strength of breathing in and out. I did not have these, but a “flow volume loop” is an easy although maybe less diagnostic way to check this. When someone is in the early stages of GBS, a MIF is checked (maximum inspiratory force) and this also looks at strength of ability to breath in and thus muscle strength of diaphragm and chest wall muscles.
It is worth saying that there are two parts to breathing–getting oxygen into the body and getting carbon dioxide out. Getting oxygen in (oxygenation) is really easier than getting carbon dioxide out (ventilation), but often people including doctors forget that both are necessary. Weakness like we have affects ventilation much more than oxygenation. Our bodies sense this and feel like we are not breathing well enough although the “oxygen level” is good enough. Since boomerbabe, you were on a ventilator you might have scarring in the lungs that makes them not quite work well enough at times. Formal pulmonary function testing might help figure out the problem.
My last comment is for Ken/Kedaso and is that if you feel a lot better after being on BIPAP even a brief time, it might be that your lungs are gradually closing down and collapsing the bottom (atelectasis) which happens frequently when one cannot breath deeply. It can help some people a lot to periodically reexpand the lungs with something like BIPAP which opens the collapsed lung parts back up so that they are usable again. If you have never tried this, it might be worth trying every four to six hours just using the BIPAP scheduled. Boomerbabe, this can also be done with something called an incentive spirometer in which you breathe in deeply for ten times every hour or so; this also helps to “exercise and build up the breathing muscles”. It is a simple little plastic contraption that is used a lot after surgeries to help people breathe deeper. With BIPAP a machine pushes air into the lungs, with this you do the work–it is just a way to remind you to do it and to give you a way to see if you are breathing in well.
WithHope for a cure of these diseases