Originally Posted by alice md

Tracy,

I was suspecting you are on Gammunex. Gammunex has a very high concentration of glycine (and so does liquid Gammaguard). Glycine is a calcium chelator. this means that it leads to minor changes in the level of calcium in your blood. such changes that will not have any effect on normal, healthy people, or even most patients with neuromuscular disease, but some MG patients are extremely sensitive to those minor changes in calcium.

most neurologists are totally unaware of this problem, even though it was described in the medical literature. and I believe that 99/100 neurologists will attribute shortness of breath to "anxiety", so obviously will not report this unimportant side effect. (that is why it is very hard to tell what the true extent of this problem is).

the bottom line is that you may want to try and switch to an IVIG preparation that does not have glycine in it. although, all IVIGs contain additives that decrease the pH, so may have an adverse effect.

I also agree with Annie, that your respiratory evaluation should take first priority. This is not something to play with. If you have difficulty moving your arms or legs, it will not endanger your life, whereas a similar difficulty in your breathing muscles will. the only way to let them rest and recover is by using a respirator that will "breath" for you.

again, most neurologists have no understanding in the respiratory manifestations of MG. one "genius" recently wrote in a letter I received from him- "she was very unwell, but had no significant deterioration in her respiratory state, although required support by her bipap."