Diagnosing Mixed Connective Tissue Disease
Rashes were the first visible symptom
I had started to develop rashes in as early as 2011, and possibly sooner than that, but I ignored them. I started to get unreasonably bad sunburns. I always had a hard time in the sun, but I would turn absolutely purple in the sun now, even with very little exposure, and throwing up on the side of the road on the way home from work was fairly normal after a day in the sun. Yes that picture is actually me, and yes that arm is actually quite burned also, and this was from about 60 minutes on the beach on a cool, blustery and overcast day. The UV index must have been high as other people got some sun as well...but it was a week before I could put on socks or even pants. That picture is from when I arrived home from the beach. By the next day everything was blistered from my knees to my feet and my legs were swollen to double their normal size.
When I would have a lot of sun exposure I started to experience times where I would wake up in the morning and my lips would be huge. I was hours from shore on a sailboat the first time it happened. I woke up, slapped my two giant pieces of liver together, and was immediately concerned...like am I OK here? It went away in a day or two, but now happens any time I get too much sun. I also started to develop blisters on the sides of my fingers. They were extremely uncomfortable, itchy, and would take forever to heal, leaving dry scaly patches.
Problems with my hands
This is one of my first physical signs if I am getting too much sun exposure or a flare of some kind is brewing. My knuckles on my hands, and one of my feet get thick and scaly when exposed to sun. It seems this is something that is getting worse for me. Then it happened. The symptom that changed the course of my life to the extent that it still, to this day, is my number one problem and day to day issue relating to MCTD...
The symptom that I could not ignore...
One day I woke up and during breakfast I noticed that my throat felt...funny. Like tight, and restricted a little bit, with a slight feeling like I had something stuck in my throat. It was hard to ignore but I figured that I must be getting sick and might likely find myself with strep throat in the following days perhaps. I tried to ignore it. I tried to just continue with my daily routines but the feeling in my throat would not relent. It did not develop into strep throat, or a cold, or anything else other than this feeling like I had something stuck in my throat.
It felt like I was having trouble getting enough air sometimes and it took constant effort to ignore the gagging feeling of my giant uvula laying lazily across the back of my tongue. This was the main complaint. The feeling of overwhelming panic as I steadily and purposefully drew each breath, fighting off the urge to both swallow and gag at the same time. I could not lay down. I slept sitting up. For someone with as much back pain as I have, this was a disaster. But, as they say, when you can't breathe nothing else matters.
Continue with the diagnosis of MCTD
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.