now I understand better.

but it is really a matter of semantics, or like in the words of Shakepeare- "what's in a name, that which we call a rose, would any other name smell as sweet"

I think that what your neuro is saying is - "you have a serious illlness, that could have been fatal 60 years ago, and that is why you need agressive treatment and can't just be left to take mestinon, but I am quite sure that with proper treatment we will be able to control this illness very well."

some physicians find it very hard to discuss those kind of things with their patients. I don't, I always say the truth, and always tell them that we are going to fight this together, just like your neuro does with you.

I think that the vast majority of patients want to know the truth and are capable dealing with it, and if you don't say clear things then it just raises more anxiety.

as I have said in another post- if you have to fight a dragon, it is better doing it with your eyes wide open and not blind-folded.

but, quite a lot of physicians (even truly excellent ones) don't share my oppinion and think they should "protect" their patient and make it pinker then it really is. I personally think this is just very confusing, and also leaves the patient alone with those concerns and fears.

I am not afraid of any human emtion and nothing is a "taboo" for me, if it's a topic my patient feels he/she wants to discuss. but that's me.

I had an excellent mentor who taught me that, the same hematologist I told about previously. he would always talk with his patients at eye level and tell them everything, even if it was very hard. he would tell me that he doesn't feel he has the right to decide for them that they should not know the truth.

and one thing that I never take away from my patients and try to give plenty of is hope, and I think there is always hope, as long as you are ready to find it.

and your overall good response to the treatment you are recieiving does sound very encouraging, and probably that is why your neuro is so optimistic and happy to keep on fighting with you, and prefers to talk about the good and not the bad things.

and even if you don't go into full remission, I am sure that you will find the way to live with this illlness, so it will not disrupt your life as much.

I am not sure if my own course will be encouraging for you or not, but as my current neuro said, I am probably one in a few million, so I don't think you should infer too much from that. and I don't have all the positive antibody tests, EMGs etc. that you do.

what I can tell you is that I work as a physician (albeit part time) continue with my clinical and academic work, despite this illness, and am very far from remission.

like you I was not and am not ready to give, up, but at some point I realized that what I should be fighting for is my productive life, with or without remission, which may or may not happen as it is really not up to me.

when I told my rehab physician that I am planning to go back to work, he asked me how exactly do I think I can do that, when I am not able to walk even a few meters, and intermitently require a respirator. so I asked him, what about steven hawking, can he walk more? and from that moment on, he became my partner and helped me do everthing in order to ahchieve that goal.

and honestly I don't think it is realstic to always have a positive approach, and never think about all the things you have lost, or never get frustrated when something that should be done easily is like "climbing the everest" for you. even though ll it's great to find the way to "climb that everest", and get to do what you need and want.
even completely healthy people, who can do everthing sometimes have moments of despair, so why can't we?

alice