20 years ago, after nearly a year of having gradually worsening symptoms, I started having a slowly progressing remission (I like this terminology).
And just like you say-nothing got in the way of it.
I remember cautiously going back to playing with my son in the park (no problem), instead of sitting and passively watching him play. And then deciding I could start my internship (no problem, except for my voice which continued to be softer for another year or so). At first I made sure all my night shifts were at the end of the week (so I could rest after that), but then realized there was no need for that.

My spontaneous remission lasted for 15 (wonderful) years.

I do have to say I almost fell off my chair after reading this response!
I´ve only ever read about spontaneous remissions in MG after thyectomy....
And I have never heard of anyone else having an experience with´slowly progressing remission´....
In fact, I´ve wondered why I haven´t even been able to locate very many descriptions about remissions at all!

I believe that the main reason for that is that people in remission gladly live their life and don't bother to come and tell us about it.

I can promise you that during those 15 years I thought very little about MG (mostly that I didn't think I had it, but regardless I probably wouldn't have thought about it much anyway). Being a physician I saw a few patients with MG during my training, but wasn't more interested in it than in any other relatively rare disease not in the field I was going to specialize in. (you can't know everything about everything).

According to the medical literature spontaneous remissions occur in about 10% of the patients and can last for quite a few years. Another 30-40% (or even more) will have remission with treatment. So, that is quite a lot of people.

Yes indeed! I can see why they would want to get on with their normal lives, as you say, and not look back if they could get on with those lives exactly as before.

But for me the process of remission has sometimes been as overwhelming and equally confusing as the process towards decline.

Though I´m not entirely 100% sure of my own status, I think anyone who has ever gone from MG to remission or back again has a story that is worth writing down

I can understand that, but your course has been overall unusual.

altering improvement and worsening give a sense of instability. whereas remission gives a sense of recovery.

I believe that the first few weeks or months of remission are confusing and require re-adjustment. It takes you time to realize that you can truly do everything just like you did before.

If during that period you have another relapse, it may be overwhelming and even more confusing.

I am also not sure that you have a true remission and not just the ups and downs of this illness and the beneficial effects of medications (even if only mestinon).

I can tell you that some of my tests were done during what I thought was a very good period (as I compared them to less good times and probably forgot what being truly normal was) and the results were very far from remission.

On the day I had my cardiorespiratory test, I asked my pulmonologist if we should not postpone it as I am going through a very good period. He said that quite the opposite he wants me to do it when I am able to exercise without having breathing difficulties after the first few steps.

I asked a similar question before my sleep study and more elaborate respiratory evaluation. I was told that if there is a problem it will be detected even if I am doing relatively well.

The results of both tests was in the range of 30% of normal.
And the effort required to do them brought me to the edge of my ability and the need for a few days of recovery.

Thank you for a very interesting read. I plan on looking deeper into the links that were posted tonight or tomorrow when I have a bit more time. I think Alice nailed it in saying people tend not to visit when things are going well.

As for me I have not checked in for a bit here. I did finally give up on the short term dream of running the Disney Marathon in January. I was in a bit of denial and I think in many ways trying to prove to others I was not going to lose this battle. I still plan to get back out there running but the goal is now long term and I will take it week by week if not day by day at times.

I have seen almost complete recovery in my vision. After 7 weeks of constant 24/7 double vision I am now seeing single 95% of the time. I still however find my arms and hands fatigue really quickly and my legs while a bit stronger than the arms are also fatigued easily. Both are improved quite a bit from my low point of October 1st. I am able to do most anything around the house as long as I use common sense and do not try and be a hero.

The neuro has approved me doing some running but has limited it to 30 second to one minute run intervals with a walk between each until I feel I have recovered enough to run/jog again. I have been out for as long as 2.5 miles now. Next weekend I will try a 5K run/walk for arthritis just to keep me moving and if I land walk the whole way so be it.

I hate taking all the drugs. I am now up to 1500mg of mycphenolate daily. (bumped to 2000mg on the 26th.) 80mg of prednisone every other day, mestinon 60% every 3 hours, with mestinon timespan overnight. I am trying to take less of the mestinon during the day many days only taking it 3 to 4 times as I feel the need. The side effect have been minimal the worst being insomnia and my BP has been all over the map on both the high and low ends at times.

I thank you all for the guidance and advice I have gotten here. I have been able to walk into my docs office with knowledge and the ability to ask the right questions and I am thankful to have a neuro that seems to respect I have done my homework and respects what I have to say. It does not hurt to have my wife who is an RN sitting with me at my appointments.

Yes most likely not a true remission.....

What is strange is that since May 2011 none of the smaller relapses have ever been able to deter extremely gradual improvement in, as you say, overall muscle endurance, and slowly increasing activity levels and this improvement already started well before my first trial doses of Mestinon which I also haven´t taken since last Wednesday.

I admit the type of breathing problems on airplanes starting this summer do make me aware of possible overlapping levels of myasthenic activity. Nevertheless even this new addition is not altering the overall direction of the curve towards increasingly normal day to day functioning. (I could quite easily draw a graph)

Who wants to go through a neuro or pulmonologist visit whilst´asymptomatic´when it´s already hard enough turning up with severe symptom manifestations! But I see, in certain instances a pulmonologist might just provide the´cinematic´technique needed to better capture myasthenic weakness than the´snapshot´attitude of some neurologists, which I know can sometimes fall short.

Thank you for sharing your professional opinions

I actually know someone who has had a TRUE remission! The woman is in her mid-50's now, but has had MG since she was 8. She did the thymectomy, mestinon and pred, as that was about all there was back then. In her mid teens, the symptoms began disappearing. Right after college she had another few rough months then everything MG just vanished! She's had 2 children (home births!) and has a career as a speech therapist. She also owns/operates a family sheep farm. She says she doesn't even think about MG anymore as it's been gone for over 30 years! She hasn't seen a neuro in over 25 years!

She's the only person I know who has had a TRUE remission, although I am sure there are a few other lucky ones. It's nice to know it's possible, but the likelihood of it actually happening is pretty remote. Everyone is so different, and we all deal in our own ways.

Hi Roger,

I am impressed by how fast you adjusted to this illness in such a short time period. It took me much-much longer to reach a similar level of understanding.

I believe this has a lot to do with it.

I hope you do reach your long term goal. But, I am sure that even if you don't you will find other important goals and will achieve them.

It's not a matter of snapshot view. A pulmonologist has a snapshot view too.
It's (as I explained earlier) looking at the right thing or not.

My pulmonologist looked at my endurance (after he realized my respiratory tests were all over the place), whereas the neurologist looked at my momentary strength.

Ironically, the endurance test was done because a neurologist who recommended checking my lactate level during exercise (due to a false positive result on another test), and my pulmonologist said that in that case we will do a more elaborate test which will give us more answers than just the lactate levels. (which were the only parameter which was completely normal in my tests!).

The other respiratory test was done because a neurologist told me with confidence that I require respiratory support because it provides psychological relief. I told him that I am fine with that, but would like to have a more accurate assessment of my respiratory status before I seek psychotherapy to help me get over this ridiculous need.

Upon receiving the results of the respiratory tests he told me that I have a rare form of MG (he himself nearly missed) with significant respiratory muscle involvement and that he fully agrees with the pulmonologist that I should keep on using my respirator.

The same neurologist decided I was in remission, because a repeat sleep study done with respiratory support showed significant improvement (as compared to the previous one which was done with no respiratory support).