MIXED CONNECTIVE TISSUE DISEASE

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primalSCREAM

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Sep 29, 2009, 5:20:34 PM9/29/09
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Hi,
I was just diagnosed with mixed connective tissue disease. Does anyone
out there have this?
I'd love to hear from you.

Thanks

Hopeful Sojourner

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Sep 29, 2009, 7:46:09 PM9/29/09
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Yes primalSCREAM,

I have MCTD.  What would you like to know?  Feel free to write me at my email add if you like.  My current, most life-threatening complication is pulmonary hypertension secondary to connective tissue disease. 

I hope they have diagnosed you early enough to be using medications to control you immune system or perhaps stem cell treatment to reconfigure your immune system.  At any rate, let us know and we will offer you the support you will need to fight this challenge.

Sending you my best,

Thomas

lg

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Jun 1, 2011, 7:48:38 AM6/1/11
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I also have MCTD...as well as lupus going on and fibro.  I have had various things in my body go wacko but with the right team they were keeping things healthy. 
 I been on many of different drugs trying to control it as well. All these auto immune diseases may be chronic but now days they should be able to treat most of the problems that come up. Key is just finding a great RA Doctor. If you do not trust or cannot talk freely to one you have now try to find one that you can. As in any relationship, communication is central in getting the best care possible. 
  I am also here if you have questions or need support. I go in spurts about checking but if you send it directly to my email i will check that within a few days and answer you as soon as possible.  Good luck...i know it sounds scary but really you can live a good life with just getting the right care and keeping yourself informed.  good luck, lg
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