MG revelations in 2016

If 2015 was the year of blogging about my myasthenia to try to figure out if there were any patterns and what my body responds to, what was the theme for 2016? I’d say trying to forget that my MG exists. 

After writing a blog every day for a year, I was fed up with MG being the third wheel at dinner and Elaine was definitely fed up with competing for my attention. So in 2016 I took some space. 

How can you take space from a condition that impacts many things in your life? I’ve found that with the less stressful life I chose to live in Edinburgh I rarely felt symptomatic this year. And when I did, I’ve learned that listening to my body – normally that means rest – is the quickest way to feeling normal again. So it’s been less of a big deal. 

I also took a step back from MG charity Myaware due to the less active community in Scotland. So other than the morning medicine ritual and the monthly blood tests, I found myself rarely thinking about it.

While I know that means I had a very blessed 2016 and there will be other years when MG plays a leading role, having it as a bit part meant I’ve been able to focus on other things this year. Writing creatively, climbing mountains, getting outdoors as often as possible, reading like a fiend…

Looking forward

If 2016 was quiet on the MG front, what does 2017 look like? It will all depend on how the next 3 months go. Let me explain. 

I had been feeling less symptomatic for a while when I had my first visit to my new Scottish consultant in late summer. As my aim has always been to get off the immunosuppressants, I decided that now was a good time to test how my body would respond. To my delight (and shock after previous experiences), the new guy was more than happy to oblige my request. So at the start of December I was finally able to start reducing the aziathioprine by 25mg each month with the aim of being completely off them within 3 months.

Each time I reduce my dose, I’m sluggish and exhausted for the first week as my body adjusts but then it goes back to normal. I’ve found that pattern repeated with all reductions and am now half way to freedom.

I’ll probably be blogging a bit more this year – firstly about coming completely off the immunosuppressants and then about travel and MG. That’s because after fighting to get healthy, I’ve got some big adventures planned for this year…and I have no idea how my body will react. Stay tuned for more details. 

8 thoughts on “MG revelations in 2016”

  1. Thank you for posting! Your blog helped me a lot when I came across it last year, delighted things are going well for you, and great photo. Anne

  2. Hi Amy, I’ve been searching a lot about MG and the possible medications and therapies for my body pains. I’ve been diagnosed last July 2016. Since I’ve started Prednisone, I’ve been experiencing muscle pains but I have a high pain tolerance. So, I can still divert but late december, I’m extremely in pain. I really don’t know what to do. My Neurologist can’t even explain my pain, though my droopy eyelid improved a lot because of the prednisone. I really thank God because by faith I can still do a lot of things but simple things I feel exhausted already and the pain is there 24/7.

    I just need an encouragement.

    Thank you,

  3. Great blog having a bad dose of Pstosis last few weeks after nearly 12 months of being really good, only diagnosed 15 months ago. Really nlce to hear from inspiring positive people like yourself. (My Wife had a stroke reently she is recovering really well and i got a virus) guess all that with looking after the house and son/ work just meant i have had some sort of relapse. Keep blogging i’m sure it is really good for you. Thanks Mark.

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