[alice md]

is in the eyes of the neurologist.

I may be wrong, but I have come to the conclussion, that as opposed to most of the medical problems I am familiar with (as a physician), where you have pretty clear criteria by which to assess the severity of an illness, this is not so in MG.

my own experience with this, really resembled the mad hatter's tea party, from alice in wonderland, more then any thing else.

I was told that I have severe MG, then mild MG (even "microscopic MG" by one), then life threatening MG (admitted to the ICU, with MG crisis) then mild MG again, then potentilly life-threatening MG, then mild, then severe, then mild, then....

interestingly, two different neuroloigsts, that saw me pretty much at the same time could say almost opposite things. one could say I am in remission and the other that I have at least moderate MG symptoms.

but, I thought it was something to do with me. possibly I somehow managed to coufuse them. or as my current neuro said to me - you are very decieving, because seeing you sitting and even talking, you appear so much less ill then you really are. well, I wasn't trying to decieve any one, just function in the best possible way that I can.

but, as I get to know other patients, it seems to me that I am not that unique, in that sense.

also, I never had this problem with pulmonologists. they may have difference in oppinion regarding the optimal managment, but they all pretty much agreed regarding the illness itself. they all thought I had significant respiratory muscle involvement, with episodes of acute respiratory failure, which require intermitent non-invasive respiratory support.

it is true there were times, when I chose not to believe what they (the pulmonologists) said and "preffered" the oppinion of the neuros, but that was my fault not theirs, mostly, they had no doubts about what they thought and said it very clearly to me (and also to the neuros), as well.

alice