Something new is growing in my mind garden.
It’s just a little shoot, but every time I look at it, it’s bigger, greener and more vigorous. It makes me want to shout with happiness!
I’ve been growing some hope.
I’m not sure if it was a bad idea to plant this seed or not. I am nervous about sharing. I’ve been a bit mind boggled by all the science and my arts brain is struggling to take it all in. But here is the story. It’s got a lot to do with blogging, doctors who never really retire (!) and the fact that sharing and connecting via social media is really incredibly powerful.
I know there will be some of you in the Dysautonomia community for whom this information might be significant. You’ll find further information at the bottom of this page.
In May, I started this blog. I started it because I wanted to yell my story out into the world. I wanted a platform. And a big megaphone. Somewhere I could shout out loud:
“This is crazy! This weird thing is happening to me but people can’t see it, they don’t know… and I am not coping, it’s getting worse all the time, my doctors aren’t helping me, and I am afraid… and I need someone, somewhere to hear my voice! Are you like me, too? Can you hear me?”
And you did. The relief of knowing you care is bigger than I can express. I can’t fully comprehend the strangeness of knowing I have had 70,000 page views, from people even as far away as Latvia… and I am so glad each and every one of you are here! New Zealand is such a small country in a big world; we’re so far from everywhere. But not when we connect on the internet.
It’s a small world after all.
I am particularly glad for two recent happenings. The first was that my lovely friend Caroline from Wellington (who also has Dysautonomia) suggested I submit some of my writing to Stuff’s Online series on ‘Invisible Illness’. I did and they published it, here. That article was read by a retired Swedish doctor living in Christchurch. She linked to my blog from there. She looked over my medical history and saw some things she recognised. And then she took the time to email me. These important words were the crux of that letter:
“…your description of your Dysautonomia, your long QT, your hyper mobile joints, your gastric dysmotility and muscular weakness just makes me wonder if another aetiology has been considered…”
She went on to explain that she herself is diagnosed with a rare condition that could possibly explain a lot of what was going on with me. She suggested I make some enquiries. That led me to seek the help of an endocrinologist. He mentioned the word channelopathy before I did. And so we have begun the process of looking in to this as a possibility. Channelopathies fall under the umbrella of Muscular Dystrophy. There are a few variations of these ‘periodic paralyses’ associated with mutations in calcium, sodium, or potassium channels, causing muscle dysfunction. Skeletal, cardiac, smooth, gastrointestinal, respiratory, facial and/or eye muscles can weaken or stop working periodically. I can’t help but think, if I am one of these patients, it would explain my problems with my heart, my digestive tract, my bladder, my bowel, my eyes and the intermittent problems I have with my gait and leg weakness. Wouldn’t that be something? A completely different tangent to consider!
Patients can have blood results within the normal range (as I do) and still have problems with these ion channels. It is notoriously hard to pick up in routine tests and is best investigated by genetic screening. This test is available in Australia. Not all genetic mutations responsible for channelopathies have been identified, but many have (80%). Treatment for patients with these channelopathies seems a lot more effective than the regime I am currently on for my Dysautonomia symptoms. People with channelopathies need to dramatically amend their diet, depending on their sub-type, and take a range of medications to manage their condition. But what I have read so far suggests that it is a condition that responds to treatment.
Could it be that I don’t even have Dysautonomia? Could this other rare condition really explain why so many aspects of my autonomic nervous system struggle to work properly?
Could my story have a happier ending than the one I currently face?
I am keen to find out. And I am not stopping until I know for sure. I might be barking up the wrong tree altogether. Or barking mad. I might have planted that seedling in the wrong place and in the wrong season. But it is a beautiful thing to be watching my hope grow for a change. I’ve decided that even if my hopes are dashed, it’s good to have them when I can. Hope is powerful medicine for my wellbeing. And I might just be growing myself a TREE!
I see my endocrinologist again in two weeks time. So until then, I am watering my seedling and holding out for some sunshine. Wish me luck!
Have your doctors ever considered this aetiology for you?
Have you ever heard of muscle channelopathies before?
Do you want to know more?
Look here first: Periodic Paralysis International
Then here: Periodic Paralysis caused by diet or exercise?
And here is the only blog I could find that wrote about correlating symptoms, if your curiosity is piqued:
I’d love to know your thoughts!