mixed connective tissue disease and life expectancy

I recently went to my doctor with body aches and severe fatigue I am only 24. I thought all the pain and fatigue that I was having was really unusual. I had lab work done and the only thing that seemed out of the norm was a 2.7 rnp. Today I had the lab drawn for a second time along with an ESR. Just because my rnp is high does that mean that I have a likely chance of an autoimmune disorder?

My Dr's & I have 9 of them has told me that MCTD sufferers like us are pretty much living on borrowed time. I have been fighting MCTD since 2000 but was formally diagnosed in 2007. I was told that most ppl with it usually has 10-12yrs. It just depends on how fast it progresses. I am at the end game of it all. My body stays swollen & it in squeezing my insides together which in turn is causing my internal organs to shut down. My Dr's told me that they can only keep me as comfortable as possible now. My liver is so swollen that it is no longer purifying my body.... MY heart isn't beating properly & I have a very loud murmur. I have 4 blood lots in my left lung caused by the MCTD which makes the left lung only working at 10% of normal. I have brain lesions which causes severe headaches. I don't go out doing the day bcuz the sun kills me. I get so sick from the light & heat of the sun no matter what the temp is outside. It may just be me but bcuz of the fibromyalga my body is in constant pain & the meds don't work that we'll on bad days. I honestly can't wait for the pain to stop for good. If you have good Dr's ask them to try Plaquanil for the MCTD & Lyrica to help with the Fibromyalga . Some muscle relaxers help some too. I use Robaxin which isn't too bad.i am also on some really strong pain killers too but they aren't as good as they used to be. The MCTD stripped my ability to walk also so I am no in a wheelchair. My case is unique & not all MCTD people are as bad as I am but at least u know what COULD happen & just bcuz it could happen doesn't mean yours will get as bad as mine. I wish you the best of luck. If you ever want someone to talk to u can reach me here. I'm a good listener if u ever need a friend or shoulder to lean on of someone who completely understands. Take Care & good luck.

Sincerely Patty Z

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Today, I found out I likely have MCTD. I am in a state of shock and could use some more information from someone who knows more. Thank you.

My daughter has mixed tissue disease she now 37 she's had it since age5 I worried for her. Is there a diet you follow my name is debbie

I was diagnosed with Raynaud's at the age of 10 yrs (although my fingers went blue and white for years before that) at age 22 I had my first ANA Titer drawn and it was 1:1280 (you want under 1:40) The pain and fatigue I have had since age 10 at least, Labs drawn for immune issues are always positive (Aldolase, RNP, ANA etc) Kidney etc are fine, liver function stays slightly elevated. I am 52 now, and just got diagnosed with high BP. one 2.5mg Amlodopine keeps it at 110/70 so the life expectancy will vary, email me anytime.

Can you recommend a good doctor. I live in Houston

Texas

Dr Paul Pickrell

Dr Monty Tew,

San Antonio Texas

Dr. Chelsea Clinton  

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I was just diagnosed Tuesday. I am scared. I will talk if u need someone.

Hello i was just diagnosed with MCTD i need more info on how you deal with it.

Thank you!

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I Sandra my name is Kesia. I just found out today that I have Connective tissue disease. I have been going to the MD for a long trying to get a right diagnosis of lupus (right). The funny thing to me is; out of the many ER doctors I've seen, not one has used the term connective tissue disease until today. Yes I want to thank her for the words of encouragement she gave me. But most importantly what she delivered to me was hope. Hope of knowing that there is nothing that I can do but live my life as happy, comfortablely, and stress free as much as possible. I have been to the ER 3 times this month of January, and I made a choice to come to another ER looking for some kind of answers and at least I can say I have a start. It has been very hard me to not know why I am going through so much and not knowing exactly how to explain it right but just can explain it to how my body feels. I truly believe God puts you in places for others to help understand health problems better without using the medical name with no explanation. Thank you for being a Listening ear. I pray that you are healed on the name of Jesus. I thank you for opening your heart to others and may God continue to bless you. Amen

So I'm the rear case of MCTD, being a man. I was diagnosed 6 years ago. I have rhaynauds in my fingers , and am often fatigued. Also have a general feeling of just feeling sick and miserable. I have found the main thing that helps me is prednisone. I live a normal life as best I can. I work 6 days a week, overtime every week and still take the wife and kids out to do things. This disease may kill me some day but I will still be the best man, husband, and father that I can be till then. Everyone needs to keep their head up. There is no need to get depressed over it. In fact that only makes it worse.

Pls can u contact me, would love to hv more information about this disease.

Thank,
Theresa

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I have MCTD for 19yrs it's been some hard times, but I still in the land of the living.

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my sister is 19 and got diagnosed when she was 18...I hate the feeling of the unknown and not knowing how long I have with her she is my best friend and I don't want to lose her I am struggling..please help me out I would really appreciate it.

Look up herbs like cayenne pepper this protect the heart and Hawthorn and do other things to help your self the doctor can't do it all they are limited in their understanding about all these diseases and how they effect people in different ways, so help your self as well and be strong and pray to the God of heaven who created all things and read Rev21:4, Isaiah 33:24.