I am new to the site and I am so happy I have found you!! I was always worried if I joined in on a support group or a chat forum I would see people with severe forms of the same diagnoses I have and become even more frightened than I already am. But, all I have seen from the previous post is support and helping each other cope in realistic ways.
I am 30 and was diagnosed last year with mixed connective tissue disease and sjogren's . My rheumotologist at the time told me MCTD was just a generic way to say we don't know what you have for sure yet and in the future it is likely I will be diagnosed with Lupus, MS, or RA. Well I felt that was a nice way to say live in panic until you are sick enough for a real disease to replace the MCTD. That was last year. I continued to feel bad all the time but since I have always been such a drama queen my family and friends thought I was just being dramatic. During this same time my brother was diagnosed with Chrone's and he was very very ill and looked ill. But, I felt bad but looked fine. How can you look so good and say you feel so bad. What they couldn't understand was it was taking 2 hours to look that good where before it would take 30 mins. I began to think maybe I was crazy. Then at the beginning of this year I began to have symptoms of all three of the diseases that make-up MCTD. Lupus-extreme fatigue, weakness, joint swelling, hands legs and feet swollen, low grade fevers everyday. Schleroderma-red spots on skin, skin tightness and itching. polymyositis-muscle weakness, muscles tender to the touch, trouble climbing stairs, hard time doing anything that requires strength. So I decided in May to find another doctor. My new Rheumotologist who I see Thursday for my newest lab results (blood test, urine, and chest xray) says that I could just have Lupus and not MCTD because a possitive RNP and ANA can be present in Lupus as well. So this has been a long road to my question but has anyone else been diagnosed with MCTD and then later been diagnosed with Lupus. Also if so do you have both diseases or does Lupus replace the MCTD diagnoses?
Thanks for listening to my story
Saw this post earlier but had to attend a lecture on remnants of the big bang...talk about confusing!
I have MCTD and had a very extreme case. MCTD is a specific disease which consists of symptoms of lupus, scleroderma and polymyositis. It has a specific diagnosis although it manifests itself differently in each case. I had symptoms of lupus and that was diagnosed first. 2 months later MCTD was diagnosed and I had the classic symptoms of PM. Scleroderma was present but it is still debateable how much it has affected me. I believe that most of its' impact was in my GI tract...esophagus, stomach, and lower GI.
MCTD often morphs more into one or another of the diseases but you still have mctd. Most typically it is scleroderma.
If the overlap is unclear then the diagnosis would be uctd...undifferentiated connective tissue disease. This often becomes a clearer diagnosis over time.
My case started with some telltale lupus symptoms: mild anemia and low platelets. They actually started in 1990 but I never had a flare until 2005. My platelets had gone even lower by Sep 2004 and my internist sent me to a hematologist who finally concluded after many months and tests that I had lupus. 2 months later I had my first flare which seemed like gout. Within a few days it was obvious it was not. Swelling, redness, pain in both feet/ankles which spread to my legs and later arms. All my joints become inflamed and I started to have problems going up and down stairs. Within a few weeks I was diagnosed with lupus and 2 months after that mctd. My doctors predicted mctd based on symptoms long before it could be diagnosed.
They started me on 60 mg of prednisone but 2 months later PM hit me like a freight train. I lost 40 lbs of muscle mass in a week and was left a quadriplegic who could not swallow. GAmma globuliin saved my life and my docs put me on imuran as well. It took 3 months of physical, occupational and speech therapy to restore my functionality. Today I have recovered substantially (played golf today) but nowhere near 100%. I work out on my own several times a week and continue to make slow progress. I had kidney problems (proteinuria, hematuria), auto immune induced hepatitis, and my entire digestive tract was involved. Prednisone helped my joint problems but had no impact on PM.
Fortunately, most mctd patients do not go through anything as bad as I did. No one can tell you how your disease will evolve but early diagnosis and aggressive treatment make recovery probable.
If anyone tells you that you look OK but you don't feel OK they should read some of my posts. While most do not have it as bad as me I am an example of how devastating this disease can be. You have many of the same problems of lupus but add in the myositis equation of muscle weakness which can be almost total. I was so weak when I entered the rehab hospital I could not raise my arms, stand, swallow, or even turn over in bed. My world was a hospital bed and I could not even reach the boundries of the bed. If I had not done hydro therapy I probably would not be walking today as I was too weak to do any exercises against gravity. I would fall like a rock.
Hopefully, you will never be like I was and recover in time. In the meantime, you have to respect what your body is telling you and NOT overstress yourself physically and emotionally....no matter what anyone else tells you. If there is a local TMA (The Myositis Assn) local support group (called KIT) you should contact them and attend the meetings. It is more likely you will find a local lupus group (Lupus foundation of America) and you will find people there with mctd and many other AI diseases. Most encourage spouses and family to attend. Everyone will get an education and appreciation of what you face.
Here is one of many links to good info on mctd:
By the way, I went from being a well conditioned athlete (although I am 64) to a total cripple in less than 6 months. Everyone was in shock to see someone who just months before had been skiing, mountain climbing, and doing things that people 1/3 my age normally do. All of us have challenges educating our families, friends, employers about our disease. But you are not imagining your symptoms and you must adjust your life. Hard to do when you are sick and barely coping with getting out of bed...if you can do that.
Ask more questions or email me if you have more personal questions. All of this is difficult but I am an example that even the sickest can get better.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.