Personally, if I could just be on mestinon and feel ok to work a full day, I'd call it a win. I have a friend who had complete remission, though, and she is a marathoner and world traveller today! I'd love to get to that point, but...just a more normal working life would be great.

Remission for me would be doing the things I miss doing while feel good and not overdoing so that I am not stuck to the sofa for two days. These things would be: long walks, heat tolerance, riding my bike, cleaning my house, grocery shopping and spur of the moment things that I don't have to ration my energy. Great post. I am sure there are medical terms for remission, but I am weak when it come to those. :-) Sparkle on DS!

Never looked the word up till today.
Said remission is when someone who has a serious illness health improves.
I always thought the word remission meant the illness was gone.
Interesting.
I improve then get weak. The roller coaster ride gets smoother but gets better.

Wow, this is really helpful. I am with you Seattle, i would love the whole. CURED thing, however, I am guessing if i can get to a point where i can work and do the things I want to when I want to. Ann, i love your analogy of a smoother roller coaster.. my personal roller coaster is still racing and spinning and clearly going up an down too much but thats for a reason, things have NOT gone smoothly in my path towards what might be called true TREATMENT... all part of a bigger plan that someone has for me... and in the end it will all be ok..... just trying.. really trying to be patient....and then i can add my story of "remission" cuz thats where i am headed.. I SWEAR!!!

yes i love this topic...I think the word remission means differnet things to all of us but basically the same if that makes any sense....I was told 2 years ago I was possibly in remission and now just on prednisone..But for me also as others have said remission to me would be doing the things I used to do and feeling good doing them...I dont have as much fatigue and eyes better but still l cant do much exercise, have also the heat intolerance, eyes still get blurry etc..much better but definately not the same...have developed other heath issues with stomache now etc sooooooo.....Im very anxious and my stress level is thru the roof..But as i said I am doing better with fatigues etc...But whether I can say Im in remission is another issue!! Love this post and very good question for us all!!! I know I can say with certainty my life is not the same and is a roller coaster ride so I guess my best definition of remission is doing more things than I could...heres hope for us all that we Can say we are in remission for good!!! We keep on a hoping!!! Good luck to us all..great post and feedback from others...

My unrealistic definition of remission is needing no meds and being able to work and go out without worrying about making sure I have time to rest. Realistically remission for me would be mestinon only and being able to work full time. I also would be able to drive and socialize in the evening without feeling like I'm going to fall over.

I do not expect the desired remission of no symptoms on no treatment for autoimmune disease. But that is not to say that I don't have a treatment goal. Mine is to be able to do the things I love without consideration of MG, obviously on the least amount of medication possible. Realistically, we are getting older and MG days when we are down can hasten some muscle loss so we may not be able to totally regain all our pre MG function and medications take their toll as well.

Balancing treatment, risk of treatment, and MG symptoms is still a fact of life for me. Some of us do not have much choice when MG is worse than any treatment. I am not there, so I still have choices, mine include exercise, eating well, taking medications, staying on top of symptoms and keeping in touch with my neurologist (since my neurologist is over 300 miles away). I think it is important for all of us to have a neurologist that shares our treatment goals. Maybe I should say all our realistic treatment goals, but why not aim for the stars?? I certainly share elinor's disgust with neurologists who are most conservative in treatment with those who have the most to lose. Just staying out of the hospital is not very acceptable when you could be climbing mountains and running marathons. Which is not to say that staying out of the hospitals and ERs is a very good goal!! b.

After having remission for 25 years (no drugs, no symptoms of any kind) I would like that again. I accepted my lot in life thinking that was the way it was going to be. But I got a miracle & had 25 years. This time around it is harder to accept Now I would love to fold my laundry without feeling like I just went for a run, walk my dog without fear of falling, go shopping without my husband saying I'll go with you because he is afraid of me being alone.

Folding laundry is interesting.
Steps, laundry and driving are most likely the hardest
I can do steps but I limit myself because they use up a lot of my nickels.
Wierd how challenging laundry can be at times.
I try to always have my husband join in on the fun. Haha..

Ann I love your responses... using up your nickels and having your husband join in the laundry fun.. ha ha.. made me smile today!

I went 1 1/2 years while taking mestinon and cellcept and thought I was in remission, but was told remission is when you take no medications and have no symtoms. Good luck , hope it lasts , Charlie

I think that this is an awesome topic mainly due to the fact there are different definitions of remission.

Having my thymectomy put me into remission over a dozen times meaning for Cj that I was completely med free for a period of time including no ivig , plasmapheresis etc.

If it wasn't for me being me and continually pushing myself to the limits my mg symptoms most likely wouldn't have exasperated and my "remissions " clearly would have lasted even longer.

Not done with this topic yet lol..Cj

Seems it means alot of different things to alot of different people. Truth is, any change for the positive might be worth it. I guess time will tell. I often thing.. "really, can it get worse?" and then some rather random symptom approaches. Had a difficult day yesterday due to a funeral and found myself with my eye closing on its own.. this is a new symptom for me.. not one I like... so... we move forward.. hopefully everything will fall in place and I can try my next step towards a new treatment.

Thanks for all your responses

Good question!

Two types: Drug induced remission and full remission.

In my opinion, the terms "remission" or "minimal manifestation" are unclear as to their definitions in medical literature. This is confusing.

For me, first I need to have a symptom-free drug induced (cellcept) remission. That would include not having symptoms and not taking mestinon at all. I am getting closer because I don't even need to take mestinon now, but know I am stronger with it. I still take 60 mg a day usually. Especially if I am to be more active or just as a precaution when leaving the home.

If I was symptom free (my eyes usually tell me everyday when I wake up), then I would taper off the cellcept slowly and see if I stay there as I go down. No second testing for antibodies would be done.

It has been 3.5 yrs on cellcept for me and Neuro seems to think I will get remission. She will accept my word for it and when I am ready, we will taper. I can do almost whatever I used to be able to do now, but I know I am not in remission. For me, remission is drug free, symptom free.

GO AWAY MG!

TJ

I want to do what I used to be able to do like Barbel said. I want to dance and run again and sing as loud as I want for as long as I want and not have to worry about how it will affect me. Even go shopping and be able to carry my clothes I am buying or not have to sit down. Remission for me means getting back to being the "real" me.