Hi

I find that all very fascinating and wish there were more experiments to read about. Today I went swimming (well no – rather stretching in the pool I would say) right after the exercise I got double vision for a few hours. I´ve also been walking and gotten home with severe weakness in the deltoids! That muscle weakness only travels to other muscle sets that are not being used when I´m in a flare up. Another thing I noticed was that it´s never worked the other way around. My symptoms are predominantly upper body so reading a lot would not give me weakness in the legs where involvement is very mild. Only those muscles that have ever been affected by the ´myasthenic monster´ communicate with each other. The others remain oblivious.

(by the way can you imagine asking that question to a normal?!!!!!)

You are young and very energetic in your life and your personality. I can imagine it is hard to turn your thoughts from ´How can I find ways to exercise? ´ to ´How can I find ways on how to rest this week?!´

At my worst in the space of four years I went from being in ´Kangaroo mode´ (volleyball team, cycling, river rafting the Grand Canyon, gymnast as a child) to being in more like a´hedgehog mode´ I would say. That was hard with a 2 year old. But the body somehow knew how to preserve itself and reverted into this pause modus and it knew exactly what adaptive behaviors to use without me even thinking about them.

4 months ago whilst using a projecting voice whilst moving around (for my job) for just one hour, my whole diaphragm felt like a belt was tightened around it and felt like I was breathing with 2 wooden planks - either the lungs or diaphragm had completely lost their elasticity and went into manual mode the next day for 24 hours. I realized the brain is a wonderful organ. Nowadays it goes into alert mode anytime I even go anywhere even close to a similar situation. And if it´s not the brain, it´s the instincts, or both. Yes my body has let me down but I trust it implicitly when it comes down to the very essence of survival.

If you didn’t sing, ride, lecture or walk I´m 100% positive that you would find some other way to survive and shine just like you already do

Anacrusis

PS A quote and some links from Alice in a previous post:

´when you use a muscle repetitively to the extent that you reach the anearobic threshold of that muscle, there are two consequences-one is that this specific muscle becomes fatigued and the other that it leads to systemic changes. (such as increased lactate levels in the blood etc). In some MG patients, other muscles can be sensitive to those effects. This phenomenon has been described by Marry Walker who noticed that when MG patients used their arm repetitively it caused ptosis and generalized weakness´


http://www.ncbi.nlm.nih.gov/pubmed/123143

http://www.ncbi.nlm.nih.gov/pmc/arti...01551-0056.pdf

http://www.ncbi.nlm.nih.gov/pmc/arti...00455-0011.pdf