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4:43pm June 5, 2015
succstobeyou asked: Just wanted to let you know I have EDS type II confirmed by skin biopsy and genetic testing. Don't let these people get you down. Before I was formally diagnosed I spent years facing a lot of the same discrimination (up to a point I almost lost my life and spent 4 months on the hospital). With treatment you can improve and lead a full, happy life. Keep your head up my friend!

Thank you!  I’ve actually recently gotten diagnosed with two things that turned my life around.  One was myasthenia gravis.  The other was adrenal insufficiency.  I think I’ve had myasthenia gravis since I was maybe 18 or 19, and adrenal insufficiency since my early or mid twenties, but both of them suddenly got very bad after a hospitalization for an impacted bowel (which also blocked my bladder) and some liver problems.  I came home, got sick with what looked like a bad flu (accordig to others), and one day collapsed and couldn’t turn over in bed without assistance.  

I spent six years in bed with no diagnosis.  I used a tilt-in-space powerchair to get around.  I was having other problems (gastroparesis, aspiration pneumonia related to gastroparesis, inability to eat) but the adrenal insufficiency meant I was much sicker than I ought to be based on what I had alone, and the myasthenia meant whenever I puked it wore down my breathing muscles as well.  And I was seriously preparing to die before the age of 35, although I didn’t tell anyone out of a misguided desire not to worry people.

My doctor saw through me and sent me to the best neurologist he knew, endorsed by my pulmonologist as well.  He also ran blood tests almost as an afterthought.  My cortisol level was repeatedly too low to measure.  So was my ACTH level.  When they flooded my system with ACTH and took a cortisol level, I had made some cortisol but not enough for comfort.  So they said the problem originated in my pituitary gland, but my adrenal glands are so out of practice that they’re involved too now.  A few months later the neurologist did a single-fiber EMG and found I have myasthenia gravis.

The upshot of all this?  Within days of starting steroids for adrenal insufficiency, I could do 20 jumping jacks and climb 11 flights of stairs.  I haven’t needed a wheelchair, and as long as I stay on steroids I now have a normal life expectancy.  I am looking forward to old age.  So I’ve already had the experience of a proper diagnosis totally turning my life around.  I could have dealt with being in bed and in a wheelchair, did deal with it, lived a perfectly happy life that way, even knowing I was dying.  But it’s much nicer to be able to just get up and walk around to do what I want.  It’s nice to be able to move at all.  I’m thinking of doing Tai Chi to strengthen my muscles again and get some movement back.  

Now that I can move, I want to move, all the time, and this proves to me that all the people who told me I was lazy were full of shit.  The exhaustion I feel after the hardest workout I do now, is not at all the same exhaustion I used to feel from low cortisol after barely doing anything at all.  That’s one thing I am trying to teach nondisabled people – that there is no comparison between normal exhaustion and clinical fatigue.  

I’m lucky I had a doctor who looked into everything and didn’t just diagnose chronic fatigue syndrome as happened to me once before.  I’m also lucky I didn’t run into a quack who would have diagnosed adrenal fatigue, which is not a real condition.  That would have ruined my credibility with real doctors, who would then not have looked for the very real severe secondary adrenal insufficiency.  Now quacks are calling adrenal fatigue adrenal insufficiency, which makes me furious.  They are preventing people with real conditions from getting diagnosed with whatever they really have, and also making it hard for people with real adrenal insufficiency (especially when it’s secondary or tertiary and not necessarily considered Addison’s Disease because of that) to be taken seriously.

Anyway enough rambling – just wanted you to know I already know how a proper diagnosis can change literally everything about your life.  I still have to walk with a cane, need oxygen, and have trouble with distances, but it’s so much better than things were before.

Notes:
  1. withasmoothroundstone posted this