Darkest Before Dawn With MCTD
In serious distress while life goes on
So here I am, just shy of 40 years old. Walking with canes, uncertain about when my legs might decide to stop working again, no longer if, and thinking there must be some way that I can get better. I feel like I am being strangled. My throat looks bad, and swollen, and my uvula is huge, my ears are plugged. I developed episcleritis six times over a few weeks. This is when the whites of your eyes turn as red-as-hell for no apparent reason. It's not a problem, just irritating, and "self limiting" as they call it. Unless it gets worse, and then go to emergency because that is one of the most common causes for going blind.
Saved by a rhyme
Can't walk, can't breathe, blinding pain, gagging all the time, can't sleep and when I do I have to do it sitting up. Confused. Forgetful. So much pain in all of my joints with no apparent cause, or even connection to each other. My eyes hurt one day. My left ankle the next. Then my arms are numb. Migraine. Anxiety. Skin hurts on my legs. Kidneys aching all the time. Face, chest, back, neck and arms covered in splotchy rashes that last for weeks at a time. So itchy. Muscle spasms and pulls without warning or apparent cause. Am I going to die? This is when I learned an interesting phrase that I wish my primary care physician had been more familiar with:
"If you can't connect the issues, think connective tissues"
Testing for autoimmune disease came back as negative
A catchy little rhyme that would change my life dramatically. Unbeknownst to me, a few of my doctors had sent me for ANA (anti-nuclear antibody) testing, suspecting that I might have lupus, especially due to my rather extreme photosensitivity. I can not explain to you what that is, because I am not a doctor, but in short it is the testing that you do to check for certain types of autoimmune diseases. My test came up negative. From my blood work, on paper I am a healthy male adult, with a pretty low vitamin D level.
A year later, symptoms continue to point towards autoimmune disease
It was almost a year later before another doctor sent me for this ANA testing again, having confirmed that the rashes on me were in fact lupus. Again the ANA came back negative. This doctor was the best of all that I have met with to date. She cared. She listened. She was extremely sharp, that much was obvious. She sent me for an ENA test. This was a very important test for me to have done. There must be good reason why I was not ENA tested sooner, but alas, some solid evidence was coming my way soon.
Learn about ENA testing for autoimmune diseases
About the author - Steve Goodale is a blogger and technical specialist from Ontario Canada, winner of the 2018 Industry Leadership Award, who reaches over three million readers per year with his popular pool and spa blog. Steve started the www.CookForMeBaby.com blog about healthy eating after being diagnosed with a rare and incurable autoimmune disease. You can read more on his story about life with MCTD here. For more healthy cooking inspiration check out his other delicious recipes.