Alhamdulillah! I’ve been upgraded!
There aren’t enough characters in the title limit to fully express how many Alhamdulillahs I would like to put in the title, so I have to settle for one.
So, Alhamdulillah, my neurologist in Chicago (who I visit this last week) has helped me clarify what exactly’s going on with my body. To make a long story short, I do have muscle atrophy, but Alhamdulillah- it’s not from unspecified myopathy- it’s from my brain!
Yes, this is actually a better prognosis than before. See, before I was told that my muscles were atrophying because there was an unknown problem with my muscles.
Now, it turns out that my muscles are atrophying because my brain is not communicating with them properly, and the reason for this is because I have:
- Autonomic Dysfunction, specifically Postural Orthostatic Tachycardia Syndrome
- Ehlers-Danlos Syndrome
I’ve leave you to the googles to figure it out. Neither are curable, both can be severely debilitating but guess what- at least they’re both known disorders! And, either one of which can be life-threatening due to complications, but neither are inevitably terminal in and of themselves! Alhamdulillah.
Did I say Alhamdulillah already? Alhamdulillah.
To be frank, this doesn’t change much in terms of me maybe or maybe not dying. Just in case you were hoping I’d be checking out soon and leaving my impressive bottle cap collection up for dibs. Or, if you were hoping I’d be magically cured. Having been to the neurology specialist in the US and been extensively poked, prodded, tested, and even strapped to a table that tilted like a carnival ride, I have the same medical issues that I left with, but with one important distinction. I’ve been upgraded from unknown and possibly terminal, to just chronic and possibly life threatening.