Lisa P: Undifferentiated Connective Tissue Disease (UCTD)

I have not been feeling right since I was a child, so it has been hard for me to know what is normal and what is not. When I was young, I remember always being very tired and weak.

It was hard for me to get through the school day. Even during recess when other kids were running and playing, I remember just sluggishly walking around until recess would be over and I looked forward to sitting at my desk and laying my head down. My mom took me to the doctors quite a bit because of shortness of breath, allergies, and pleurisy. The doctors were never able to find anything definitive.

I ended up going to college but it was very difficult. I do not know how I made it through because when I was not in class I was sleeping and never had the energy to study. I did not think anything was wrong with me, except that maybe I was extremely lazy.

After college I got married and got pregnant on my honeymoon. It was a horrible pregnancy. I was very sick my entire pregnancy and could not even get out of bed. I went into preterm labor at thirty weeks. With the use of medications, the doctors held off the birth until I was thirty-six weeks along.

Two years later I got pregnant again. This time I started having regular contractions at sixteen weeks. I probably would have miscarried but my doctor put me on medicines that they normally would not use unless the baby was at a viable age. However, the doctors kept changing the medicines because I kept having adverse reactions to them. Fortunately, my daughter was not born until thirty-six weeks and she was okay. She is now eight years old and I have been infertile ever since.

Right after this baby's birth is when I really started experiencing weird symptoms. I was very fatigued and my muscles were so weak that I could not even function. I would rest on the couch for most of the day and I could hardly lift my arms and legs. Simple tasks would utterly exhaust me. I would also had numbness and dizziness, and at times I came close to fainting. By then I realized that this could not be all in my head and I began to go to the doctors and undergo tests. I had an anti-nuclear antibody (ANA) test which was elevated, so I was referred to a rheumatologist. However, the rheumatologist did not find anything and said maybe I had fibromyalgia. I did not feel that he took me very seriously.

Several years later we moved. It exhausted me and left me unable to function for months, so I went to see a family practitioner. He found that my ANA was 1:320 with a speckled pattern and told me I had Undifferentiated Mixed Connective Tissue (UCTD) disease. He referred me to a rheumatologist. She did tests and this time my ANA was only 1:80. She said that was not very impressive and if it was still at 1:320 she would have been concerned. Then she said asthma can cause an elevated ANA as well. The only problem was that I did not have asthma symptoms, and this did not explain the speckled pattern. Anyway, for the next year I felt almost normal, so I did not go back to the doctors and I thought I was getting better.

However, in the last three months the illness has been attacking me with a vengeance! I have had debilitating fatigue, muscle weakness, joint pain, aches all over, irritable bowel, numbness in my extremities at times (which I am discovering is Raynaud's because just before they go numb my hands and wrists turn blue, then red and blotchy), and other strange symptoms.

I went back to the doctor and my ANA is now 1:640 and for the first time my RA is also positive. I have an appointment with a new rheumatologist on May tenth. Hopefully I will get some answers.