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2:50pm September 25, 2014

Wow. I slept all day today.

Missed occupational therapy for the second week in a row because I was too tired to go.

I think it might be the CellCept but I’m not sure.  There’s other reasons that are just as plausible.  But at least I haven’t had breathing problems yet.  Hopefully those breathing problems I had were a cortisol-depletion-related stress thing rather than a CellCept thing.

I still get really nervous that I’m taking a drug that when you google it all you get is stuff about anti-transplant-rejection drugs.  Like “Hello I am suppressing my immune system now, why is this a good idea again?!”  I understand myasthenia can be autoimmune, so yeah, I get the point, but it’s nervewracking knowing what I’m doing to my body.

Meanwhile my doctor has finally agreed to get me a port.  We’re just waiting for him to write the order for surgery.  This also makes me happy/nervous.

And I’m going to be tested for mitochondrial disease, which my doctor also said he was very happy about because he’s been wondering about it for awhile and he really wants to know whether what I have is myasthenia gravis, mitochondrial disease, both, or neither.  Given that it did seem to respond to l-carnitine all those years ago, I have always wondered, myself.  But lots of things respond to l-carnitine.

It’s strange that we’re going back to all the things that were tested and thought negative in the first place.  We naively thought that if I didn’t have the most common antibody test results for myasthenia, then I didn’t have myasthenia.  Then I got the single fiber EMG test and it seems we were wrong.   We thought of mitochondrial disease and discarded it as improbable.  Someone did test my cortisol levels, which were low that day, but just on the threshold, so it didn’t get reported, and my doctor didn’t see the results until he went back and looked at my old labs.  

So…yeah.  As usual, lots of medical stuff going on.  It’s strange, even at my healthiest, it’s like there’s all these medications and stuff propping me up, take them away and I become super-unhealthy again.  This is definitely not the same thing as being cured, no matter what people gleefully say when they notice I’m walking and not in a wheelchair anymore.