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This seems to be the place to be when it comes to rare diseases! I was wondering if there were any folks here who know something about mixed connective tissue disease. It's VERY rare, so I think most people have never heard of it! If you have, please tell me what the life expectancy is for people with mixed connective tissue disease.

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I sometimes think that even the most rare and unheard of disease has become a step closer to fame through the world wide web. This is certainly true for mixed connective tissue disease, about which a lot of information can certainly be found on the internet. It is basically a dangerous cocktail of lupus, scleroderma and polymyositis, and it can certainly be fatal (mainly through the heart disease that can be triggered by the disease), though treatment does exist. This is mainly symptom relief - it can't be permanently cured yet.
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I too have been diagnosed with MCTD, it is my understanding that the life expectancy is similar to that of lupus wherein many people out live the 10 year following, you can live a long full life, just keep up on your dotor visits to head off any problems before they become serious. you need to become very familiar with your body and dont dismiss anything that raises a flag. good luck!
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I have Mixed Connective Tissue disorder I have it the 3 year's If you ever want to talk please email me

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Sandra wrote:

I have Mixed Connective Tissue disorder I have it the 3 year's If you ever want to talk please email me


I am in dire need of some hope after seeing my MD yesterday
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What can i do to help you
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I have been diagnosed with MCTD and have some questions

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hi sandra how long a person live after diagnosing with MCTD
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Hi my name is Raquelle and I'm 22 years old. I was diagnosed with Raynaud's disease when I was 18 yrs old. I was then assigned a rheumatologist but rather ER doctor that I visited monthly and last year December while i currently was stricken with bells palsy when I was 21 I was diagnosed with MCTD and i started to get really bad arthritis pain which my doctor informed me the inflammatory arthritis was due to the MCTD and the Raynauds was the first stages of my disease which would develop itself. My symptoms mimic lupus a lot and well sometimes I get really dizzy and depressed and I feel alone I wish I had someone who knew what I was going through. Also recently I went to my primary physician with back painand found out I have two herniated discs in my lower back and I never did anything physically to my knowledge to cause that. 

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I have had Mixed connective tissue disease for about 10 years now Iam 46 years old. woman.
i also have Sjogren's/fibromyalgia. I have so many different problems
because of these diseases. an these drs are not doing anything about it
an now my family thinks i might be having mini strokes(TIA). so please if you have any of these please keep going to the drs. i have been going but because i am a hmo though medicard i cant get go to the right drs. so if you have any question i can try to answer for u.
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Life expectancy is generally good for auto-immune disease if it is well-managed. Most people with auto-immune disease can live a near normal life-span. The key to auto-immune disease is management of symptoms and the best way to do that is regular visits to your doctor and good communication as to your symptoms and the effectiveness of your medications.
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I also have just been diagnosed with mixed connective tissue disease. I have been experiencing lots of pain and intestinal problems for the last few years. The pain seems to be getting a lot worse and affecting more areas. I have not been able to work for the last 7 months. I was wondering if you could please share with me your symptoms and how you are dealing with them?
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I have Sjogren's, MCTD, Reynaud's and Hashimoto's Thyroiditis. My symptoms include gastro issues, sleep issues, joint pain, muscle pain, muscle spasms, peripheral neuropathy, fatigue, depression, chronic dehydration. In addition, I have fibromyalgia. It seems as if autoimmune disease is a domino effect. Once you get one, you are more likely to develop others. I won't kid you, I have done a lot of crying over the

Last eight years. Plaquenil has been a lifesaver as well as muscle relaxers and pain meds. I am also on thyroid replacement therapy. I have good days and bad. The key is not to do so much on the good days that you exhaust yourself. You will pay for it later. Learn your limitations asee make sure you are seeing good doctors. I go to UTMB, which is the University of Texas Medical Branch. Any good research hospital with a good rheumatology dept would be a good bet. My first rheumy was horrible. Not all doctors graduate top of their class.

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Pain is usually the most difficult thing to deal with. It is important to have a companion to be with you. it really helps to curb depression. So, keep friends and family close, or my doctor even suggested getting a dog (trained therapy dogs are best but any friend will do). Stick close with your doctors and make sure that you are seeing someone that you trust. I have been batteling this disease for eight years now. keep hope and do not be afriad to live when you have a moment when you feel okay.
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Hi Sandra, You have had this for 3 years, how far along did they discover it, early, far along? I was diagnosed last week and am going to see the Doc today for some answers to lots of questions. What is your prognosis? What do you expect will happen to you, and me. I don't find a lot online, everthing is repetitive, refers me to the Lupus foundation, Sclerodoma foundationa and one for Mysitis, but nothing on Long Island, that is where I live. What insite can you give me? Grace

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