We’ve made it this far without a listing of my symptoms and diagnoses, but I suppose it’s time at last for me to own up to the truth of what I deal with.
Let’s start here: each day is different. Some days all of my bugaboos are acting up, most days I have a few to cope with. And some special days, everything is quiet and I get to be extra-productive.
My major diagnosis is MCTD or Mixed Connective Tissue Disorder, an autoimmune illness trifecta of Scleroderma, Lupus (SLE), and polymyositis. Scleroderma attacks my skin and other connective tissues, creating scar tissue and hard collagen where it should be making soft, smooth skin and muscle.
Systemic Lupus Erymatosis is the most dangerous form of Lupus, another illness where my immune system attacks me instead of foreign invaders.
http://www.lupus.org/newsite/index.html
Polymyositis directs its attacks at my muscles, so now I am phenomenally weak for a 35-year-old. It’s difficult for me to stand up from the ground or to reach up over my head.
http://www.mayoclinic.com/health/polymyositis/DS00334
I’m currently being treated for Fibromyalgia (unexplained soft tissue pain) and Myofascial Pain Syndrome (pain in trigger points) . Neither of these is fun on its own, but together they really hurt. Loud, distracting, red pain. [I promise to get to the solutions and how I cope later!]
http://www.mayoclinic.com/health/fibromyalgia/DS00079
and
http://www.mayoclinic.com/health/myofascial-pain-syndrome/DS01042
These are my main issues. Currently, I’m also experiencing a lot of issues in my gastrointestinal tract. My GERD is excruciating at night, waking me up with food or acid in my esophagus or mouth.
http://www.mayoclinic.com/health/gerd/DS00967
The GERD is worsened by my hiatal hernia, a hole where my esophageal sphincter should be.
http://www.mayoclinic.com/health/hiatal-hernia/DS00099
And Gastorparesis means that the food going down does not move very quickly into the intestines, which increases the incidence of GERD.
http://www.mayoclinic.com/health/gastroparesis/DS00612
I’ve chosen the links based on if the issue had a support group or else I’ve chosen mayoclinic.com, which I’ve found to have good information formatted in for easy use.
One more important website for researching diagnoses like these is
a wonderful site that cares for people with may auntoimmune conditions beyond arthritis.
Well, there’s a start. I’m sure we’ll find more on this journey together. But from here, you can get a sense of what I live with most days. And now to rest. Can’t wait for tomorrow!
February 9, 2009 at 5:16 am
Hi. I also have MCTD. Where do you live and what kind of doctors do you use? Also, how were you dx? and what blood tests do you get taken? I can also answer a lot of questions if anyone has them.
Amanda
February 9, 2009 at 8:20 pm
Wecome, Amanda! I am so grateful for your Comment. How many of us are there?
Here is my list of docs–I have an Internist, a Rheumatologist, a Cardiologist, a Gastroenterologist, a Dermatologist, a Pain Doctor, and a lot of ER and Promptcare helpers. I also get a lot of support from my nurses and therapists.
I live in beautiful Bloomington, IN.
I’ve been diagnosed a lot of times with different names: lupus, fibro, and scleroderma were the first and are the most common. Mostly blood tests and my extreme muscle weakness led us to the MCTD diagnosis. I believe it was the CPK that was the most important blood test.
I have LOTS more to say about this, so I’ll put it on the schedule!
Thanks again. I look forward to learning from you!
Juliana