Good Morning. I am new to the forum and thrilled to know I am not alone in MCTD.

I am not sure how this forum works, I don't see a topics page or newbie page so I will just add a message.

My journey with MCTD began when I was very young, at age 18. I was diagnosed with something new about every 10 years until physicians began to suspect there was something more going on.

My diagnosis began with Hypothyroid, and soon after Adrenal failure or Addison's Disease. It took some time to diagnose despite the darkening of my skin colour to a deep copper color tan. I was given replacement doses of steroids, prednisone and Florinef. I felt much, much better very quickly with only a couch day now and again.

Somehow however, I could not be just a well as my endocrinologist wanted me to be. Still tired and low energy. I was not treated very well by this doctor because of this. Finally about 10 years later, with determination I fought to see a physician at a women's health hospital. I had been having some some issues with my men's trail cycle, as in Addison's Disease this shuts down very early, I was 34. It was at this visit, the physician listened. She heard me tell her of unusual dryness that had been plagueing me for years. This was were I first heard the words Sjögren's Syndrome. It was from there to the Canadian Sjogren's Society and the specialist associated. A wonderful doctor who not only listened to my symptoms but shared them to a colleague, a rheumatologist. There was allot of bloodwork that day. It was not long until I heard the words Lupus, and further to a Hepitologist who spoke of Primary Biliary Cirrosis.

Not a lot was done for me at the time as I was told that the treatment options were sometimes worse than the diseases it's self. I was in shock I think, as I was young, age 34 and had absolutely no understanding of the new words Autoimmmune Disease. The low dose prednisone replacement for the Addison's disease hid allot of sins too I think.

I have done incredibly well I believe living a good life with little thought of my basket of diagnosis. I learned to navigate life and fatigue, and acute illness, and stress and over work. I love life and am grateful for it as there are so many dealing with so much worse.

However, things change over time and with age like most I began to struggle more. It had been about 35 years living with my basket when I started noticing pretty profound issues with eating and GI problems. Once again I was in determination mode for answers and subsequent knowledge and hopefully treatment. I had learned new words, Gastroparesis, which is slow gut motility. A hideous illness that I think has been the hardest of my life to navigate. It robbed me of the pleasure of food, social interaction, added horrible pain, nausea, vomiting and malnutrition. It took almost three years to gain an understanding and get some help. On the way I also gained a new understanding of a problem diagnosed years before called IGA Deficiency. This diagnosis is one of the mucus membranes, mouth, sinus, throat, lungs, gut, GI tract and so on...the defence system is broken leaving me prey to infection.

All the pieces have only now began to fall together. I am not sure why it has taken so long to gain this understanding as it has been now 40 years, but there is a new name. It is called Mixed Connective Tissue Disorder. I had heard it some years before but it was never really explained and most of the time when visiting with my rheumy I was not interested in titles just dialogue, hope, and help. My rheumatologist and I have been together for 13 years now. She is compassionate, caring, unpretentious, and knowledgeable. She has been my rock when sooooo many others have been soooo much less.

So here I am. With my new understanding of MCTD and why my body has struggled so. With also an understanding that my worsening symptoms are to be expected after all this time. In fact from what I read I have been terribly, terribly lucky to live as well as I have and currently after this latest bad patch am now doing better again. I look forward to working with my rheumatologist in the New Year. Methotrexate is now back in my future so there is even more hope.

Finally I am thrilled to share my story on this forum with some very, very special people. People who know, who understand exactly my life and I theirs. I must say to you, thank you for being here and that I am in awe of you, your strength and courage and your determination to love life enough to fight hard for it.

CallieCat