I am glad to hear that you too think that your symptoms are generally under good control, and allow you to live a relatively normal life, although not fully in remission.

I agree with you that the exact terminology is much less important then the way you feel, and if you and your neurologist are basically in agreement, it doesn't really matter what you call it.

sorry to hear about your lung problems and hope this is taken care of as well. and that you are being followed by a good pulmonologist for that.

I should proabably explain why I was asking this question.

my own experience has been different. I was told by a neurologist that I was in remission, because my symptoms, signs and results of EMG, didn't fit what he would have expected it to be. so although I was intermitently respirator dependent due to reccurent episodes of acute respiratory failure (according to every pulmonologist that was involved in my care), I was "technically" in remission.

I did find another neurologist since then. But, am interested what defines "remission" for neurologists. Because my current neurologist who does not think I am any where near remission (talking about being given realistic expactations even if they are obviously not want you want to hear), told me that he can understand why others could think that I am.

my current neuro relies much more on the symptoms of the patient, and also checks what you can really do (not push my arm once etc.) and is not misslead by my very energetic appearance. even he told me that the first time he saw me he thought I was much less ill then I really am, because it takes a very small push to get me over the edge, but if you don't push me there, I seem fine ( I hope what I say makes sense to you), and he said that this is very unusual for MG patients.

he also made me understand for the first time that when I talk about the fluctations in my symptoms with other patients and we seem to be talking about the same thing, we are actually not, as my fluctations are much more extreme, and gradually progressive, which is not the usual case for MG patients.

and he could also understand why neurologists that saw both sides of the extreme but not how it actually happened ( like he did for the first time), would think that it is due to "emotional problems". (what I couldn't understand why not even one of them thought of examining me in the way that he did, but that is a different matter).

I have actually learned to "take advantage" of this feature of my illness (if you can't beat them, join them, right? ), by recognizing the very early signs of weakness and stopping right there. but, whenever I forget this, even for a short while and forget to be cautious I can easily go into a respiratory crisis within minutes (that is why I have to have my respirator with me at all times).

my rehab physician was actually quite ashtonished to see how easy it was for me to go into "crisis", when he tried to deliberately distract my attention, and made me talk and lift my arms up at the same time. he said to me-you have to plan every move that you do, hah? and I said yes, but I have learned to do it almost automatically, by now.

well, enough talking about me, just felt it was "unfair" to ask you all those questions without it being reciprocal.

thanks again for your answer and hope that you keep on doing well, and even better once your lung problems are taken care of as well.

best,

alice