I Have Mixed Connective Tissue Disease

A Mixed Connective Tissue Disease anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Mixed Connective Tissue Disease. You're not alone. 272 People

    Dealing With Mctd

    Hi Everyone, I am the Mother of a 19 yr old MCTD patient. She was diagnosed when she was 15 yrs old. We to misplaced the warning signs eventually through her UNC Immunology Specialist was able to correctly diagnose her. Her first attack was high enzyme levels attacking her large...
    nf030591 nf030591
    46-50
    4 Responses Oct 21, 2010

    What I Want

    How do people do it? How do they know they are sick, they know they will only get worse and yet they keep on living. How do they find the strength? How do they find the heart? How do they find the courage? I don't have cancer. I'm not dying. And I feel guilty for even saying this...
    Tryingtobebrave Tryingtobebrave
    18-21, F
    4 Responses Dec 18, 2012

    I was informed I had MCTD yesterday,

    I see my doctor tomorrow and I don't know what to ask? I keep reading articles and i think it's making me a little nuts. Any tips on what I should ask?
    funskippy funskippy
    41-45, F
    May 29, 2014

    I was diagnosed with mixed connective tissue

    disease last year, I was miserable and desperate for a better life. I decided to fight back and I became a fitness coach for Team Beachbody. This has seriously changed my life and my health as a whole. My passion now is helping other people with mixed connective tissue...
    lizmidkiff lizmidkiff
    26-30
    1 Response Apr 21, 2015

    Now What....?

    I was just recently diagnosed. I'm still processing, I guess. The beginning of this year I had symptoms of a stroke on and off for three days. I was seen by two neurologist... One thought I had a small anuerysm, the other thought I just had migraines... The angio ct came back...
    Angela32 Angela32
    31-35, F
    2 Responses Aug 9, 2013

    Mctd And Pregnancy

    Hello I'm a 30 year old woman, I have had Fibromyalgia for about 10 years, and almost 3 years ago developed MCTD.  I actually find the Fibro pain worse, but only because no meds will affect my pain.  I do quite well on the meds for MCTD (but only if I'm on a lot of the...
    Meegeeq Meegeeq
    26-30, F
    11 Responses Jan 2, 2010

    Hello, I'm 23 years old

    and was diagnosed with Mctd when I was 11, I'm just looking for people to chat to who are in my position as I have had such a hard time of things on and off for all these years, I think it would help to know I'm not the only one, just let me know if anyone would like to have a...
    kimbo17 kimbo17
    26-30, F
    2 Responses Mar 25, 2014

    Hey ! I have had this disease

    since I was 9 years old. I am 22 now. I was sick for a large amount of my childhood. I been in remission for 7 years. I have been experiencing this battle alone other than with my family....I want to connect with someone that also has this and create a friendship and a bond that...
    evermoreme evermoreme
    22-25, F
    2 Responses Oct 21, 2014

    They Say It Only Happens To Girls...But I Deal With It Every Day

    I feel trapped sometimes, all it does is hurt. I wonder if old people feel this way all the time. I limp, I am slowed, and the meds make me hungry all the time. My mctd is mostly arthritis, but I have symptoms of lupus. Getting to work is sheer will power, and the things I...
    camarocasanova camarocasanova
    36-40, M
    Jul 30, 2013

    Myth? Foods People With Mctd Should Not Eat

    Newly diagnosed a little over a month ago, I have reading all that I can in order to learn how to prevent or minimize flare ups. Alcohol as a 'No, No' makes sense to me. The medical literature says that there is no conclusive, scientific evidence that specific foods cause flare...
    FullofFaith FullofFaith
    46-50, F
    2 Responses Apr 1, 2013

    I'm only 15, I was 14

    when I found out that I had mixed connective tissue disease. It all started with finding out that I had anemia. I thought "this will be okay, it's easy". This was during the end of my last year in middle school. Well I started getting bad stomach pains that made it to where I...
    ShyRedneckGirl ShyRedneckGirl
    16-17, F
    2 Responses Jan 4

    Finally A Dx!!

    After 5 years, 4 primary physicians, 15+ specialists & 4 different health insurance coverages, I FINALLY have a diagnosis! I am sure that I am not the only one who experienced the failure of our healthcare system during my quest for answers but it is somewhat comforting to hear...
    MomO376 MomO376
    31-35, F
    3 Responses Dec 5, 2011

    I am 20 & was diagnosed with MCTD

    when I was 15. The past 5 years have been one heck of a roller coaster. Not only has my disorder been bothering me, but I've developed migraines, knee problems, and a lump in my stomach. Well im not even sure its a lump...still waiting for results. Waiting...its the scariest...
    Anaya1118 Anaya1118
    22-25, F
    Jul 1, 2014

    MCTD And Relationships

    I am 27 years old, two years ago i was diagnosed with mctd at the same time as going through IVF treatment. Since going through 2 unsuccessful cylces of IVF, and finally getting my head around the mctd my relationship has suffered greatly. I am depressed and have been advised...
    sweeng sweeng
    26-30, F
    Aug 1, 2013

    I was diagnosed with MCTD seven years ago at

    the age of 41. Plaquenil has really helped but I still have to deal with fatigue and "brain fog"on a daily basis. It's difficult for me to explain how this condition has changed my life. I don't look sick. I just look overweight and out of shape. I understand why others would...
    Connie85 Connie85
    46-50, F
    3 Responses Jun 21, 2015

    I have been diagnosed with MCTD in May 13,

    2013. I've been to doctors after doctors. Hospitals after hospital. None knew what was going on with me. I felt more weak each day. Making myself starve because I couldn't stand food anymore. I was dying. My mother couldn't look at me, everyone thought I was on drugs or had an...
    laquino98 laquino98
    18-21, F
    1 Response Mar 20, 2014

    I am 16 going on 17. I was diagnosed with MCTD

    when I was 13. I try to do my best to get through the hard days but it's not easy. I'm better in warmer weather so I plan on going to college in Florida, currently I live in New Jersey
    bri527 bri527
    18-21, F
    1 Response Apr 2, 2014

    MCTD and Secondary Sjogren's Syndrome

    Hi, I was diagnosed with MCTD and secondary Sjogrens after being told for years that I simply had depression and anxiety, irritable bowel disease and "played the sick role"  That really hurt!  I was not at all malingering!
    cherrieannm cherrieannm
    26-30, F
    1 Response Sep 2, 2009

    Not Sure Really What'S Happening To Me

    Hey, I am in one of those troubling moments today, was diagnosed with MCTD about 18 months ago. have been using the anti malaria for the 18 months with other painkiller. not helping and i am given the steroid injections when unbearable. i live in the UK and whilst i can get to...
    Imustgoon Imustgoon
    46-50
    2 Responses Jun 27, 2013

    I'M At My Breaking Point

    I'm 19. I was diagnosed with RA when I was 5 years old. I went through methotrexate treatments and a load of other pills and went into remission for a few years. My childhood was so happy. I loved every minute of it. I thought I was normal like all my friends. I looked forward to...
    Kenzielise Kenzielise
    22-25, F
    1 Response Sep 19, 2013

    I was diagnosed with MCTD in 2001.

    Prognosis was not great as I didnt' seem to respond positively to treatment. I went into remission in 2005 with pregnancy and it lasted until June 2012. This time, I've decided against traditional medicine, as it made me so very sick last time and I wasn't responding well to it...
    CrimsonSelcouth CrimsonSelcouth
    36-40, F
    Feb 24, 2014

    While researching my disease

    for the first time. I've read some story and the comments and i was in tear, not because i was sad. Mostly because I was happy to know there was someone going through what I was going through. All though I'm a lot younger I'm 14 about to turn 15. I was diagnosed in may of 2010...
    aab729 aab729
    16-17
    1 Response Jan 11, 2014

    Hello, I am very delighted

    and excited to connect with people who have been diagnosed with MCTD too. Sometimes you can feel alone, and the true nature of your spirit can get lost by becoming something it was never intended to be. I wish I had something of this nature available to me when I was first...
    DivineHealth DivineHealth
    46-50, F
    Jan 1, 2014

    i guess i have already join this group

    but have forgotten my info. any1 online now
    lesego4nam lesego4nam
    31-35, F
    Dec 23, 2013

    Mctd...so Very Frustrating

    Hi, I am 23 and have just recently been diagnosed with MCTD. I have symptoms of both lupus and scleroderma. I have 2 children and am a full time student. This disease is very frustrating to me. I was finally getting everything in my life in order and then wham, one day it hit me...
    Artickat Artickat
    22-25, F
    4 Responses Dec 1, 2009

    Confused About MCTD

    I was diagnosed about a year ago. I recently went to my Rheum doctor, he asked how I was feeling. I told him that I wake up fatigued, hand joints hurt a little in the morning, but as the day goes by I tend to get worse with joint pain in my hands, sore throat, hoarseness, back of...
    mccast mccast
    51-55, F
    2 Responses Aug 26, 2013

    Newly Diagnosed - Now I Can Move Forward

    I have MCTD - Overlap - combo of Lupus/RA/Soj/Ran/Poly - basically inflammatory arthritis.   It mostly affects my hands, spine, hips, my right shoulder. I do yoga everyday and that is critical for my well being. Now that I know what I have, I can move forward...
    gratefulandhappy gratefulandhappy
    41-45, F
    2 Responses Dec 28, 2009

    15 Years Old

    I was first diagnosed with lupus in May . So far my doctor has put me on plaquinil,presidone,methrotrexate,omperazole,luecrovin, and my therapist has put me on Welbutrin . Im just really scared that my life would end shortly because of this . I still have fatigue , major...
    zavala2008gdz zavala2008gdz
    18-21
    Aug 28, 2013

    Healthy Until Chemical Exposure And Virus. Now Mctd??

    I'm a 49 year old woman, wife and mother of 2 grown children. I was healthy and 'normal' until about 18 months ago. I was working as an in-home live-in healthcare provider. The bed at my assignment was suspected to have mites or something causing several employees to itch while...
    Libbyann Libbyann
    46-50
    3 Responses Mar 3, 2012

    I'm not sure if I'm even reaching the right

    support group. I'm 32 years old I have just been diagnosed with Mixed connective tissue disease a few months ago, I have had 3 grand mal seizures this New Year's Day 2014 and I have been really sick these last 2 months of June and July and I still can't get over what ever is...
    monim23 monim23
    31-35, F
    1 Response Aug 11, 2014

    I was diagnosed in October 2013,

    After countless trips to the doctor and numerous tests, My doctor finally decided to test me for autoimmune issues.I guess it was a relief to know that I actually had something wrong and that it wasn't in my head. The medication has not really helped, it seems to make me feel...
    tshea31 tshea31
    36-40, F
    Jan 24, 2014

    I need a bit of guidance.

    After years of going from doctor to doctor I was diagnosed 3 weeks ago. Though I was confused at 1st, looking back at my entire life it is clear that I've had this for awhile. The most devastating part of my diagnosis was knowing for sure that now I have 2 autoimmune diseases (I...
    babygirlshev babygirlshev
    26-30, F
    1 Response Mar 5, 2014

    After many years for a diagnosis I finally was

    diagnosed with Mixed Connective Tissue Disease. I am happy to have a diagnosis and am taking my medicine, Plaquenal. I understand there is no cure. I sometimes am very frightened for my future. My case is mild from what I have been reading. I know it can become progressive and...
    Oceanoftears Oceanoftears
    41-45, F
    Jul 19, 2014

    MCTD and Secondary Sjogren's Syndrome

    Hi, I was diagnosed with MCTD and secondary Sjogrens after being told for years that I simply had depression and anxiety, irritable bowel disease and "played the sick role"  That really hurt!  I was not at all malingering!
    cherrieannm cherrieannm
    26-30, F
    2 Responses Sep 2, 2009

    This Is All Knew To Me....

    I found out i have mctd in january havent had my first appointment yet. every day i feel like crap and in pain with my hands, arm or knees. i feel sick to my stomach, have trouble breathing especialy eating or drinking have trouble catching my breath at that time. i wake up in...
    mswade mswade
    36-40, F
    1 Response Feb 8, 2012

    I Have Mixed Connective Tissue Disease

    After having my son in 2000 at the age of 20, I began to have symptoms that doctors thought to be Lupus. I had swelling in my face, hands, and feet. My hands & arms blistered in the sun, and i had joint pain. My hands and feet got very cold and painful in cold tempertures and...
    tm1107 tm1107
    31-35, F
    6 Responses Apr 17, 2012

    MCTD seems to be one of those things

    that you have to experience in order to truly understand. Everyone has some kind of pain to deal with (the pain of loss /emotional pain/ mental stress, etc.), but mctd is in a category of its own because it's completely internal and is not something that is visibly believable...
    JGPep JGPep
    31-35, M
    1 Response Nov 3, 2015

    There's Just Me...

    i don't particularly know how to do this... and by this i mean talk about my health issues. i'm a 31 year old native New Yorker. i was first diagnosed at 27 with dermatomyositis. From there i was then diagnosed with RA. FROM THERE i was then given a diagnosis of MCTD at 30. i'm...
    Ibejewel Ibejewel
    31-35, F
    2 Responses Oct 20, 2013

    Connective Tissue Disease, Why Me?

    I am 36 years old a have been diagnosed with mixed connective tissue disease. I am a professional athlete (horses) and have worked my whole life to be one and now am not too sure that I am going to be able to accomplish what I set out to. I am having all sorts of symptoms, most...
    Mbnks Mbnks
    36-40
    3 Responses Feb 5, 2012

    Finally An Answer ... Mctd

    Hi, I am 22 years old and I was diagnosed with MCTD 2 years ago. Being told I did actually have something wrong with me was a huge relief, as silly as that sounds because as i'm sure everyone reading this would know MCTD is no fun. I went to numerous doctors all telling me the...
    DaniLou DaniLou
    22-25, F
    13 Responses Apr 5, 2011

    2013.....short And Simple Wish

    It is my hope that all of us who suffer with chronic pain and other issues from this disease will have a better year. I wish for healing for us all. 
    okcgal61 okcgal61
    51-55, F
    2 Responses Dec 29, 2012

    Recently Diagnosed And Searching For Treatment

       Hello everyone! I am 35 years old, wife and mother of two young boys. I am a non-traditional college student and have just been diagnosed less than two weeks ago. I thought that once I received a diagnosis finally that I'd be able to find relief, but that hasn't...
    darkamethyst darkamethyst
    31-35, F
    6 Responses May 20, 2010

    My Hope Is In God

    well it started many years ago and I didn't know how to feel about the matter all I knew was I felt pain everyday my joints are swollen my knees hurt even my skin hurtsI knew something was wrong but when I finally went to the dr all they gave me was medicine for depression so I...
    weasler45 weasler45
    56-60, M
    Jul 25, 2013

    Just Got Diagnosed Two Weeks Ago.....

    Hello, My name is Ellasha and I live in Louisville, KY. I'm 27 Years Old and  I just got diagnosed with MCTD two weeks ago. Before being diagnosed I was a happy go lucky running around go getter. I just got married in 2009 and we have three lovely Boxer Dogs who we...
    EllashaB EllashaB
    26-30, F
    7 Responses Sep 11, 2011

    Diagnosed At 8

    Hi, I am a 20 year old girl, and I was diagnosed with MCTD at age 8. I've been told I am the youngest ever diagnosed. I am not sure that, that is true. My full diagnosis is MCTD including Rhuematoid Arthritis, Lupus, and Scoleraderma. I was also diagnosed with Reynods Syndrome...
    TanzeniteTurtle TanzeniteTurtle
    22-25, F
    3 Responses Sep 24, 2013

    I was diagnosed about 3 years ago.

    Been sick for at least 5 years, probably longer. I have tried many meds and still can't get my disease out of an active state. Not sure what's worse the disease or the treatment. I find my illness isolating friends and family don't understand. I hear things like you don...
    Enaed Enaed
    46-50, F
    2 Responses Aug 29, 2014

    My Mom Just Got Diagnosed In June

    My mother was diagnosed in june with mixed connective tissue diease and pulmonary fibrosis. The specialist said it is the mctd causing the fibrosis on the bases of the lungs. She has been in and out if hospital since june, shes on morphine for a chronic pain in her head that...
    reg35 reg35
    36-40, F
    Oct 10, 2013

    Connective Tissue Disease

    I was diagnosed with UCTD, sjogrens, RA, sacroiliitis and osteoarthritis after I had visited 14 different specialists that kept saying there was not anything wrong with me.  I have been in the medical field 15 years.  I knew there was something wrong with me...
    BrandiMG BrandiMG
    36-40, F
    7 Responses Jul 26, 2009
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