Annie.....

In a way I was trying to show the opposite!... my gradual strength increase over the last few years! Do you know – I think for those who are undiagnosed, measuring for yourself is a tool that aids retention of your own sanity as well as making a file for future reference. I have a far from scientific mind and doing the odd measuring experiment has really really helped me to summarize what has and make some sense of what is happening whilst having done this..... ´solo trip up Mount Everest and back down again´ without ever having had a neuro partner.

I was wrong about thinking that the handwriting reflected my core energy levels as it doesn´t. Nevertheless there are gradually less and less entries of symptoms in my own personal diary and more and more diary entries of various activities. Despite isolated episodes of myasthenic weakness my energy levels are continuing to rise as well as there being more and more predictability in planning and fullfilling short social engagements ahead of time.

I was trying to remember exactly what you had said in a previous post about MG affecting more than just the´traditional´muscles, and then you answered. Thanks!
In that case, I wonder what people´s most unusual MG muscle affected might be…

I also remember having a really old phone but without a speaker and had gotten used to laying on the sofa with my phone pressed to my ear on a pillow to talk with my husband....´hands free´ The arm could manage to hold the phone 30 seconds absolute MAX at that time and with elbow pressed into hip bone

About treatment – In one way I feel strongly about NOT taking Mestinon without any supervision whatsoever. In another way I know some people who are worse off than me do not get access to it or have it taken away and I´ve read horrendous stories about the consequences. In yet a third way. I don´t think I need it regularly and wonder if saving it for a rainy day will actually preserve its efficiency so to speak. If at some point in the future I get a full on myasthenic crash like I´ve read people get after long remissions then I can start with this more ´innocent´ drug without having had my body needlessly use up it´s ´performance potential´.

About proving I still have MG! Thank you for asking such great thought provoking questions, Annie! Actually no – at least not in this post! With my great energy levels, my problem is more…. Should I keep my appointment with my doctor tomorrow or not and ask for a referral to a pulmonologist? When I looked back at my post about breathing problems on the flight descent I had 3 weeks ago. You know what? I realized I had forgotten just how bad the symptoms were and how the brain just decided to´move along´the minute they resolved. Then again I haven´t had any respiratory symptoms whatsoever since that post - just a tiny cough here and there where saliva is catching because of the freezing cold temperatures.....

For once I am not trying to prove anything just interested in measuring, and how others do it. And no! Most definitely not at the expense of living my life, at least not these past few weeks


Anacrusis