Yes! Makes me think that in MG you have measurable antibodies but the level of antibodies does not correlate with disease severity and then there´s those seronegatives!

I couldn´t help but think that in 2011 muscle weakness in one category was severe (deltoids, trunk, neck) But in 2012 muscle weakness was mild in the same muscles but spreading slowly to more categories (breathing muscles, swallowing and eyes). So if I did have MG, that parameter in my case would mean that ´less is more´.

In my case the physicians are not looking at the wrong thing they are not looking at all. But for every time that they have missed a new development - I have been closely watching what I now in hindsight would call a very slow progression to a myasthenic peak in severity followed by an equally slow progression into remission. (with one small exception)

What I have noticed about a slowly progressing remission is that NOTHING is able to get in the way of it in the exact same way as nothing got in the way of symptoms gradually progressing to a peak a few years ago. Stress levels, fitness level and nutrition all appeared to play secondary roles. Mestinon does not seem to be interfering with the bigger picture and perfectly exponential curve towards remission as I take it irregularly for irregular symptoms and the fluctuations are following and adhering to that dominating curve very obediently despite their erratic nature.

The amount of information and dialectic on this forum has made me comfortable enough to summarize my own symptoms during my years of´visible´myasthenic muscle involvement in a way that despite continually fluctuating parameters, if I walked away from this forum tomorrow I would have enough information to make a concluding summary that has not only helped me to find my own position on the myasthenic scale but has also given me tools to process and classify my experiences in a way that I can confidently use as a conclusion or even a new beginning if need ever arises.

And that is probably the longest sentence I ever wrote in my entire life.

So, after reading this thread, I wish that Alice would be in charge of all MG specialists and research for diagnosis and classification at a worldwide MG central somewhere.


My observations since May 2011:

• Extremely gradual role reversal of exercise severely exacerbating myasthenic weakness in 2010 - to a more neutral position over one year later and then finally some positive effects post exercise late in 2012

• Very gradually increasing amount of activities per day from one to three

• Very gradual increased increments of fine motor muscle skills over the space of 18 months including going from not being able to open a packet, turn a key, pull a weed, type a single sentence to..well....actually typing thousands of them

• Gradually increasing neck muscle endurance (lego on floor with child one hour)

• Very gradually longer periods of sitting - from maximum 5 minutes upright in a chair April 2011 -
  to entire long haul flight in November 2012

• Gradually longer walks

• Going from not being able to lift a small pillow to being able to lift a heavy child

• Very gradually going from being able to hold flute to face for no more than 5 seconds to being able to play instruments again for normal and longer periods (over one year to regain finger dexterity for piano playing)

• Very gradual - less hours of payback time after activities (4 weeks of severe payback time after minimal gentle exercise in August 2010) to November 2012 (zero payback after return longhaul flight, work the very next day including overtime and lego activity with son.)

• Gradually noticing myself standing whilst others are fatigued and needing to sit down

• Meeting more and more new people because trunk muscles hold me standing for longer periods of time and voice and lung capacity is stronger for longer periods of social interaction.

Because of prolonged periods of coughing on my spit and breathing issues I wouldn´t have even considered writing this - except that it is only now that I am really noticing some re-acquaintances with the old energy I had from 2004 (an extremely fit person with minimal intervention!) To be able to repeatedly access increasing previous energy levels is surely not typical for MG.

I am extraordinarily grateful that the progression of remission from myasthenic weakness is such that I fortunately can afford to make my own parameters at least at this very moment in time, and thanks to a few, those parameters have oddly enough ended up being the most stable and coherent ones of all...


Anacrusis

(I may very well regret writing this in a few months! Thanks for the opportunity for thinking out loud...)