So often in our lives we come up against forks in our path. We reach a point at which there are two options ahead of us – Sometimes we can chose which path to take, sometimes we have no choice but to see which path has been decided for us. That can be really tough, waiting to find out the answer to something life changing. But what if both options were pretty flipping awful? What if you hope for one option, but also desperately hope that it’s not… and also hope for the other option, but desperately hope not, again?
I’ve never considered this situation before, why would I without having been in it? It’s not something that comes up. But here I am. I’m waiting on some blood tests results, and the tests being positive is bad, and the tests being negative is bad and I genuinely can’t work out which is the lesser of two evils.
The red pill or the yellow pill? Ok so neither of them are anything to do with my current situation, I just thought the imagery was quite apt.
As it happens, I don’t get to pick which pill. I’m just waiting, and waiting, and waiting. It’s been over 5 weeks since my blood tests and I was told 4-6 weeks, and I’m getting impatient, so so impatient.
And for the first time it’s not because I’m desperate to know that my results are all clear. I’m in this weird, very unsettling position of half hoping they’re clear and half hoping they’re not.
My neurologist didn’t dismiss me (yay), he agreed there is, absolutely, something neurological going wrong with my body (boo, but yay for not being ignored!) but he couldn’t be sure what. Many of my symptoms point to a condition called Myasthenia Gravis but I have a few too many symptoms, ones that seem to point to other neurological conditions. As such he thinks I may have something called Functional Neurological Disorder. Neither of these options are great.
Myasthenia is scary, it can sometimes kill people, but it has tablets. It has tablets, and operations and treatments and sometimes people even go in to remission, or sometimes they just help control the condition to make it liveable, and sometimes they don’t help at all but at least there’s hope. But it can kill people. My friend with MG says that she’d rather have MG than FND.
FND has no cure. It just is. The best he could offer me is physio which is all well and good but when I use certain muscle groups they get weaker and weaker until they just, stop, working. I don’t mean they get tired, I mean they stop. My friend with FND says MG is worse.
I’m currently waiting on blood tests results which should show me if I have MG. If I do there’s tablets which might help, but might not, but at least there’s a might. If I don’t have MG then I have FND and there’s no cure. So whilst I lay there, fighting back tears, because I can’t lift my arms, I can’t hope that at least some tablets will help, I’ll just have to live with it.
Both pills are bitter, I don’t want either. Some people might not understand why I am so desperate for these results, every day there’s no letter in the post I want to cry, but maybe when you imagine the above… maybe you will understand?
Sorry for the negativity but I just needed to get all of this out. And maybe some of you will understand and feel a little more uplifted because you’re not alone.
I know I haven’t explained either condition it much detail. Once I have my diagnosis I promise I’ll come back and explain better.
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