4:14am April 1, 2015

Anyone have any ideas about this?

It was true back when I walked more, prior to my health crash, as well, but it’s still very true now even with treatmentl.  People always mistook it for an autistic mannerism, a ‘stim’ in other words.  But to my knowledge, it wasn’t.  Isn’t.  Both.  Not an autistic thing at all.

I can’t stand still.

I don’t mean i’m hyperactive and need to be in motion all the time.

I mean this:

I can walk.  I can walk.  I can walk further than I could walk before the health crisis, when I still needed a manual wheelchair and could not climb stairs without my legs giving out.

But.

I can’t stand.

If I stand in one spot too long, even with the cane, my legs start to buckle out from under me.

If it’s relevant, I have myasthenia (either autoimmune myasthenia gravis, hereditary myasthenia, or hereditary autoimmune myasthenia gravis – yes, I know “autoiimmune” and “gravis” are redundant, but not everyone does)).  I take Mestinon (pyridostigmine) for that and it works really well.

I also have secondary adrenal insufficiency (meaning it’s starting in the pituitary, not the adrenals – the pituitary tells the adrenals to make cortisol… but my adrenals also don’t make as much cortisol as they should when flooded with the pituitary hormone ACTH, so who knows what’s going on there), which means that stress – physical or emotional – can make me weak, exhausted, and in extreme cases can interfere with breathing and cause a life-threaetning adrenal crisis.  (This is why I’ve become such a stickler about avoidng stressful situations lately.)  I take Decadron (dexamethasone) for that, and it works so well that people at the clinic are calling my doctor a miracle worker.  Which given I’d been bedridden for six or seven years before they found the problem, I can forgive them for thinking about it that way.

The Decadron may also be helping the myasthenia, if the myasthenia is autoimmune.  I’m also taking CellCept.  Normally a transplant anti-rejection drug, but being used here as another test to see if the myasthenia is autoimmuneor not.   which suppresses the immune system, and so does Decadron, so please don’t bring your unvaccinated kids anywhere near me.  I really hate having to run as far and fast as I can to get away from sick people,especially since they didn’t ask to be sick.  And the hospital scares me even more, full of superbugs as it probably is (most hospitals are these days).

So I have MG and AI and both of thoe can cause muscle weakness.  AI causes generalized weaknes.  MG causes weakness as applied to specific muscles tha have been used too much.  (Basically, it’s a defect in the muscular energy cycle.)

And i’d thought that maybe holding my body up was making my legs weak from MG.

But then I realized that i can walk just fine, or “just fine” for me, which means I need a cane to go any distance, crutches on uneven terrain, and needing oxygen for reasons even my pulmonologist is hard-pressed to understand.  But I can walk, a fair distance, which is more than I can say from before.  I used to use a foot-propelled manual wheelchair, often even in the house. And after my health crashed and burned, that turned into a tilt-in-space and reclining powerchair (fancier than a dentist chair, such hat my dentists preferred I stay in it instead fo using theirs.

But anyway.

If I can walk long distances now, why is it that a minute or two (less, often) of standing perfectly still (but without knees locked, I know better) is enough to make my legs feel like wet noodles, and eventually they give out or I have to lean on a wall or something?  The only other thing that works – and this is why everyone else seemed to see autism as involved – is rocking back and forth, one foto=

Does anyone else have this problem?  Regardles of diagnosis – I have many that I didn’t list here, those are just the two most likely to cause muscle weakness.  

And it’s adrenal insufficiency, the actual medical diagnosis.  Not adrenal fatigue, a diagnosis favored by quacks – they diagnose real people with real diseases with a false diagnosis, thereby delaying treatment and/or giving unnecessary and dangerous treatment.  And lately they’ve gotten wise to the fact nobody believes them, and started referring to adrenal fatigue with names like “mild adrenal insufficiency” or “subclinical adrenal insufficiency” or other things that are maddening to the people who actually have these conditions.

Anyway – regardless of your diagnosis, or lack of diagnosis,or diagnosis i wouldn’t agree with (like adrenal fatigue) – if anyone has this happen to them, and has any tips on how to deal with it, please let me know!  Oh also sometimes there’s pain involved, and I just realized hypermobility syndrome may be part of this, but… who knows,any suggestion would help, honestly.  The cane at least signals to people “I need to sit down, fast”.  But I’d like a better solution than that.   AnneC says there’s still something the doctors are  missing about me, and I wonder if this is prat ofit

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