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Ellie’s Story (MCTD)

Ellie's Story (MCTD)I was just diagnosed with mixed connective tissue disease two weeks ago. I thought I’d share my story! 🙂

It all started back in May 2013. I thought things were going well. I had a good job that I enjoyed working at and was surrounded by good people.
I went home to surprise my mom for Mother’s Day and the night before I left to go back where I lived I woke up and couldn’t breathe very well. My parents and I thought it was just allergies.
After a couple days of not being able to breathe super well I went to a walk in clinic and they thought I could have blood clots so they sent me on to the ER. Six hours, a positive D-dimer, and a CT scan later they decided I had pneumonia.

A few days after all that, my mom called me and told me that my 19 year old cousin had just past away in a car accident. I ended up catching a ride with some family home and went to the funeral and got back home. Three days after his funeral I ended up in the ICU. I had been on antibiotics for almost a week and if anything I felt worse. I went to the ER and got admitted. They ran millions of tests and put me on oxygen and even put a PIC line in! They couldn’t figure out what it was or how I got whatever it was. They don’t know how I got better, but I did. I went home with my parents to recover. After a couple weeks recuperating  I went back to where I lived and tried to get back to some normalcy. Then I started not feeling well again. I went from having a fever to the chills, on and off for a week. My fevers were usually around 104/105. I went to a doctor and he couldn’t figure it out and gave me IV antibiotics. A couple days later my dad came up and took me to the ER and they just pumped me with fluids and let me go. A couple days after that my mom was there and I started puking and had the worst headache. We went back to the ER and they did a spinal tap and sure enough I had meningitis! I spent another week in the hospital. They didn’t know how I got it since everything they tested me for came back negative. But I got better from that. I went home with my parents again and ended up having to move in with them and quit my jobs because I couldn’t take care of myself.
I didn’t feel well. I was EXHAUSTED all the time. I was weak, no energy, my heart rate was always going three times as fast as it should all the time. I also got these weird, painful, bruised lumps on my legs. I went to an immunologist and nothing really came of that. I went to a dermatologist for the lump. And after lots of blood tests and three biopsies later, they didn’t know what was going on. I went to a cardiologist who referred me on to an electrophysiologist who then referred me on to Mayo. This was all over a course of nine months. I went to Mayo and after a week of testing they decided I had mixed connective tissue disease.  I now have to take prednisone and plaquenil plus some other medications. I feel weird cause everyone is so happy and excited that they know what’s going on and I’m thinking yes it is absolutely nice to know what is finally going on, but it really sucks that this is what I have. I have to still get my thyroid figured out and I need to work on managing my reynaud’s.

The hardest part I’ve been dealing with is my energy. The prednisone has been giving me energy and so I get excited and think I can do all these things and I realize that no I cant do all those things anymore. That’s the hardest part for me so far. I’m only 22 so I have quite awhile to figure it out! The crazy thing is that everything that happened to me before, the breathing problems and meningitis, weren’t even connected. Just a string of bad luck.
The stress from being so sick within months of each other and the stress of my cousin passing away just triggered the autoimmune disease full force. I’m dealing with it alright but there aren’t a lot of people in my community who get it. Everyone can sympathize but it’s not quite the same. My family has been amazing throughout the whole thing and you definitely find out who your friends are throughout something like this. All in all I think I’m doing okay with having it and I just wanted to share my story.
Thanks for reading my mini novel! 🙂

Submitted 03/11/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Cass

    Hi Ellie! I understand your story 100%. I too have MCTD, with SLE being my most dominant and annoying disease. All I can say is that in time it gets easier to manage, I have had it for 20 years. There are still things I am learning at 30 about the disease, but it does get easier and you are never alone! Love Cass x

  2. Ellie

    Thank you! Everyone always asks me if I have any questions about it but I feel like it’s just something I’m going to have to learn to control and get used to as time goes by. I’m glad to hear that it does get easier. Thank you so much!!!

  3. Carey Boissy

    My daughter is 21 and recently diagnosed in the last six months with MCTD and SLE. It has definitely been a learning curve, trying to figure out what causes flairs, the loss of appetite, new onset of symptoms including pain, rashes, raynauds, itching, etc. It would be great for her to be able to talk with others close to her age that understand what she is going through. Thank you for posting your story for other to feel less alone.

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