Tracy,

There are two things you need to understand:

1. your husband is like that because its hard for him as it is for you, but in a different way. it is very hard to have a spouse who is so ill, and not be able to do much, and constantly hear from physicians that there is no need to do much any how. at some point you do not know who and what to trust, and it gets into a vicious cycle in which the medical staff think you can't be that ill, if your husband is doing his own stuff and not fighting for you to receive better treatment, and your husband thinks you can't be that ill, if the medical staff who is so knowledgeable and obviously will not risk a patient's life is doing nothing. and each enforces the others opinion, with you stuck in the middle.

2. this is all wrong. from the way it sounds, you are very ill. you are on the verge of a crisis. your husband can't handle it, the medical staff are not knowledgeable about it. in fact they don't have a clue. when you see your neurologist make sure he understands the severity of your condition and that he consults a pulmonologist to do a full respiratory evaluation. even though you are very ill, tired and weak you have to be very assertive and make it clear that you are insisting on that. make sure he understands that you are ill and not "depressed" or other BS.

I have met very few neurologists who were ready to "admit" that I have had a crisis (in fact numerous). the pulmonologists were very cautious in their terminology and called it "respiratory compromise" or "acute respiratory failure". so the name doesn't really matter. the fact is that when you have significant respiratory muscle weakness anything can tip you over the edge from being able to ventilate properly to not being able to do so.
one WLE neurologist told my husband (who called him when I stopped breathing on the way to the airport and required respiratory support) that I will be fine and can safely fly home. and my husband, who was overwhelmed by this situation, just did what he said. fortunately I had my own respirator, and don't easily panic, as I do not want to even think what would have happened if I did not.

I am telling you all this, so that you will understand that most of them (including world leading experts) really don't know, and you have to find someone that does. it's hard and exhausting, but you have no choice, because like Annie says-your life depends on that. this is a rare illness, and having such severe respiratory symptoms is even more rare, so very few know how to evaluate and treat it. unfortunately, many think they do and give you false reassurance without understanding anything about it.

My doctor is Dr. Gerald Weiss in Norwalk, CT. He is my Lyme doctor and diagnosed me with small fiber neuropathy which is what I get the IVIG for. Now he just diagnosed me with MG. I have had no treatment for it except the IVIG incidentally, but last night he had the ER put me on Mestinon, 60 mg three times per day. My breathing is no better but my right arm seems stronger. That's it.