For me I
totally agree that neuros dont understand breathing stuff and MG. If I could find one that did I'd be diagnosed! My great pulmo has now taken to cutting and pasting my pulm test results into his notes so they hopefully get that I am consistantly declining. He has tried to go into more and more detail including how the big change that occurred in a set of pulm tests that were done before and after a pose of mestinon.
None of this stopped the last neuro from telling my daughter I wasnt gonna stop breathing so dont worry AND that a person can have breathing problems from deconditioning her way of dissmissing my pulm results. I wonder if she even let the 2 students go over the pulm reports. They werent even aware of the neuro that admitted me for myasthenic crisis.
He put in his last report that I need a double blind tensilon test the double blind is cause he knows that they will tend to interpret a positive test in some dismissive way as they did in neuro-optho and it wont help me. I love this guy and he is a senior doc and is the director of the pulm lab. You would think that would get me diagnosed.
Annie59
Quote:
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."
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