I’m Okay…My Biggest Lie

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I read an article recently on my primary condition, Mixed Connective Tissue Disease (MCTD or Sharp’s Syndrome) and found it particularly disturbing.  I am always looking for new information on MCTD as it is a rare autoimmune disease with little to no research done for it, so it’s not likely to make front page news if a breakthrough is made.  Instead of finding a new treatment or therapy that could potentially help, I found this…

Mixed connective tissue disease is an autoimmune disease that was first characterized in 1972. It is also called Sharp’s syndrome and is commonly referred to in its acronym, MCTD. As the name suggests, the disease is a combination of several disorders that affect various connective tissues in the body. Lupus, scleroderma and polymyositis are the primary disorders whose symptoms affect individuals with MCTD. Like many autoimmune diseases, MTCD progresses over time. That is, some of the symptoms associated with the condition do not develop simultaneously but instead occur in sequence over a long period of time. Because of these traits, MTCD often prove difficult to diagnose, while treatment is limited to the management of symptoms and the extension of mixed connective tissue disease life expectancy.

As an autoimmune disease, MCTD is a degenerative disorder that is caused by the overactivity of the immune system. In this condition, like in any of its kind, the immune system mistakes healthy cells for foreign bodies that need to be destroyed. Thus, normal cells deteriorate and eventually die. The outlook of MCTD is generally worse than that of single connective tissue disorders, such as systemic lupus erythematosus. Even in the presence of prednisone treatment, the condition tends to continuously deteriorate the patient’s body. This is because MCTD is a progressive autoimmune disease that naturally develops into worse disorders or creates more complicated and fatal symptoms. One common condition met by patients with MCTD is progressive systemic sclerosis, which has a poor prognosis. 

Mixed connective tissue disease life expectancy is decidedly short, and death is inevitable in most cases. However, up to 30 percent of cases are mild, and there are individuals that experience remission. This is particularly true of patients with no anti-RNP antibody in their blood.

You can see the reason for being disturbed by this.  My rheumatologist and I have discussed MCTD but she has never mentioned that it can be a life threatening condition.  The article mentions that remission happens for 30% of patients and this is usually true for those without the anti-RNP antibodies, which unfortunately, I do have.  This is kind of a shock to me.  I have held out hope that one day, if I did everything right, I would go into remission.  I knew it wasn’t a cure, but remission could possibly give me some time with a little less pain.  Now, that hope is gone and I don’t know what to think anymore.  I was aware that MCTD was progressive, I just didn’t know that it was fatal.  I may have to just sit with this new information awhile before I can say, “I’m okay” again.

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33 thoughts on “I’m Okay…My Biggest Lie

  1. Yes, those are all linked I’m sure. Have you discussed this with your rheumatologist? I know it’s so dang cliche but everyone says move more and it’s true but we can’t always just jump into moving our bodies without beginning to heal our emotional pain. It really affects our physical pain so much more than we realize. When I decided that I was going to be happy regardless of what my body was doing, even in the middle of intense pain…things began to turn around a little bit. I felt like moving emotionally, I felt motivated to move.
    Sure, I had days I had set backs from moving too much but that was my fault, not moving really. I just did it too much. So I backed off. I finally found the sweet spot and yes still have bad days but so many more good days!
    Find your own happiness in where you are. Decide that nothing is going to take your joy from you. It’s all the difference.
    I need to write a post on this. LOL

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  2. I am glad and saddened that there are so many of us. I was diagnosed with mctd 9 years ago. I have been good and not so much over the years. Stress up= horrific fatigue and hair loss with increase in canker sores and pain. Do you know anyone that teaches kindergarten in the inner city that isn’t stressed? I have worked both part and full time. It is hard to do less- I feel like a failure. Lazy. I am considering retirement this year because i just cant seem to get it under control. My husband is supportive but I can’t help but feel like less than a wife/companion. I have been on Plaquenil since the beginning and various pain meds that barely take the edge off. Rnp levels continue to rise- doctors don’t seem to think much about it.
    Most the time I write off that I have a cronic illness. Then I cant…do….anything. I feel dead.
    I am 52 and I feel 80. I wonder what I will feel like when I am 80? Or if I will feel at all.

    Here is a list of other issues I have been treated for since diagnosed with mctd.. there has got to be a connection.

    Strep in ear- had to get tubes
    Heart murmur
    Bursitis
    Artritis
    Carpal tunnel
    Tendonitis
    Runners knee
    Bone spurs
    Hives- from being in sun
    Rectal bleeding
    IBS
    Celiacs
    Asthma
    Allergies
    Heart PVCs
    Chronic headaches
    Neck pain-arthritis
    Extreme Canker sores (large as a nickel)

    Yuck.

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  3. So I just got diagnosed on Monday I also have rnp. I have had symptoms since 2000 but have been push aside as pregnancy, mitral valve and scholisis and just blown off. I have scolosis and lordosis after maximum amount of time in physical therapy my therapist said I think its systematic. I am grateful she had an idea because who know when I would of got diagnosed. I have numbness in feet and hands, joint pain, knots on all my fingers on palm side, swallowing problems,and in last 2 weeks severe chest pain and feel like I ran a marathon but sitting still and like I cant get enough oxygen. I went to er they did ekg and chest xray but when I mentioned autoimmune they sent me home with nothing, saying its your autoimmune we can help. I have robaxin and every dr says not to stress. I have no heat our whole heating system has to be replace waiting on parts just space heaters, my husband has congestive heart failure, I am working 2 jobs, have 3 kids (1,4 and 11). All my appointments are few days away. My questions are is anyone else lung issues starting yet if so how do you help it without medicine? What is 1st appointment with rheumatologist like? What is the new normal like? I want to be positive and fight this just scared as doctor say my condition isnt good with back already in such back shape be prepared fo walker. I am 31 with 3 small kids tht I want to fight for but my chest has hurt so bad and just want to feel like I can breath.

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  4. My brother has MCTD can some one see something nice to him…? please…He has two little girls a nice wife.. and he has 41 years old.. which state now more about this condition? Doctors now about the illness? my english is not so good..but my brother, he understand english.. please can you email him… Thank you

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  5. Thank you Maureen for your response.
    I am sorry you have to suffer the same pain. I see a pain specialist and general practioner and I would definitely discuss your pain at night with both of them, or have your PCP refer you to a pain specialist if you’re not seeing one! Reason I am saying this is that there are many other options other than steroids. I personally won’t go on steroids for more than a week at a time, I’ll suffer through before I put my body through that! I just don’t react well to them, some do…ultimately you have to do what is best for you and take what your doctors say to heart but you know your body the best…not them! So you have to speak up and make sure they are treating “you” and not just doing what they “think they should” do for you. I hope that makes sense. It’s a bit of a brain fog day… I need to post soon, we are packing and moving and it’s been CRAZY and my pain has been over the moon but I am elated to be moving…so I can handle it!
    I hope you are able to figure out a solution or at least some relief soon! I do know how bad those night pains can be! Hang in there and message me anytime at tinamariemiller@outlook.com. You can also find my personal page on Facebook at jpchefzgirl@yahoo.

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  6. Hi
    I have been dx with mctd It took3years to get a. diagnosis
    My biggest concern is my pain issu.I’m on oxycontim I still have pain
    I still have pain all day and nights. I frel like I ‘m sleeping on rocks and my husband has to help me turn and get out of bed
    I’m thinking of using steroids or . cytoxin.
    Loved reading
    Your helpful and insitfu) thoughts.

    Nof alone
    Maureen

    Liked by 1 person

  7. Stephanie –
    They say we can’t choose our family but we can choose who we spend time with. I believe that is true and all that really is important in life. If your family, including your mother, can’t show you respect and kindness when you try to show that to her…then there is nothing really that you can do but move on with your life and surround yourself with those who can. It really is that simple…and dwelling on what happened or didn’t happen in the past won’t change it and won’t make anything about tomorrow better, so you have to find a way to be okay with taking care of you and how you handled yourself (which I think is just fine myself) and move past it and if you have to forgive yourself because you are not a horrible daughter, your mother was not a grateful mother, plain and simple. It wasn’t you…at least not alone. So for peace sake, let it go…you have to know she has.

    As far as your path, I admire all you’ve done…such a brave and free-spirit, truly! I hope your garden brings you much joy…you should send pics! I’d love to see it!!

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  8. Hello,

    Angie, I am 61. Your medical history has many parallels with mine.
    I believe that many symptoms/issues I experienced earlier in life (joints, Carpal tunnel, Plantar’s fasciitis, various tendonitis issues, endometriosis, etc) were in fact early signs of MCTD. I certainly had Sjogrens starting in my mid-20s and Raynauds years before the MCTD symptoms got bad.
    In general, I am doing well with my illness. I do have positives for ANA, RNP and several other specific antibodies, yet over time my symptoms have improved. I would never say I am back to normal, but I am able to do many things.
    I also have really bad days.
    I tell everyone when we make social plans, that there is a 20% chance I will have to cancel.

    I wrote a paper on MCTD when I was taking an Immunology class a few years ago, but my web server is not functional since I moved. If I get it working, I will post the link again.
    ———-
    An update from me.
    This past year has been very stressful for me, and my health has suffered along the way.

    A year ago I was facing eviction and had no place to go (since the SF Bay Area has some of the highest rents in the US, and I can’t leave the area just yet, but plan to). The building where I lived in for 11 years is now being torn down to build $$$ condos.

    I ended up with a custom manufactured home in a 55+ mobile home park.
    I designed some things into the plan to make it more disabled friendly (the manufacturer is totally clueless even though a significant part of their market is seniors, my neighbors complain about the bad design of their homes for people who can’t bend well, or are in a wheelchair or use a walker – and I am still fighting with them about a few things they did that are not at all ADA compliant and are not what was in my contract).
    There are still many projects that need to be completed. I am not even close to being settled in yet, but progress is being made.
    My raised gardens beds let me have a small herb and vegie garden for the first time in many years.
    The house is small, about 750 square feet, and I will be very glad when I have it paid off in a few years so that I don’t have to have a roommate to afford monthly housing costs (the space rental in the park + the payment for the home itself equal 80% of my income, so I have to have a roommate for now). I’d love to be living with a significant other, but at this stage of life I am very tired of sharing small spaces with an unrelated adult.

    Because it’s a mobile home, when other obligations in the bay area end, I can have my home moved to a more rural, quiet and less-costly area.

    Besides packing & moving and part-time work, I care for a friend with COPD & dementia (she has no family). She lives 30 miles away, but with traffic, it takes me 75-90 minutes to get there.

    And late last summer my 83-year-old mother died.
    She had a partner of more than 30 years, long-term care insurance, good hospice in her community, owned her home, was financially able to do extras if she wanted. Although diagnosed with lung cancer more than 4 years earlier, and told probably 6 months to live, she had no symptoms at all until the last 6 months. For much of her final months, her primary symptom was fatigue, later weakness and digestive issues, and only late in the process breathing problems. We all die eventually, but how it goes varies quite a bit, all-in-all she had a good death.

    Her death was stressful for me mainly because she was relentlessly critical of me.
    My mother never believed that I have a serious illness, considered me lazy and irresponsible.

    I kept our interaction to phone, email and texts, and didn’t see her in-person for many years.
    My mother smoked heavily, and I had breathing problems with 15 minutes of going into her house – as far as I’m concerned she could do whatever she wants, but I also get to say “No, I don’t want to be around it.”

    I stopped working full-time when I was 46, although since then I have consistently taken classes, done volunteer work, part-time work and child care for friends as my health has permitted. When I was younger, I had jobs she disapproved of, such as cook/chef. And several times I quit jobs that I disliked or where I was sexually harassed, in order to travel – low-cost camping and couch-surfing – something I have no regrets about, since traveling is much more difficult now with disability issues and chronic pain.

    Under pressure from other family members, I did go visit (several days each time) a couple of times in her final months. It was awful, I couldn’t say anything without being told I was wrong.
    I feel like a horrible daughter. I didn’t enjoy our time together, and given what she said in her final email to me, I don’t think she found it pleasant either.
    I’m sure eventually I won’t think about it, but yesterday was mother’s day, so it’s on my mind.

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  9. Yes, Yes and Yes. I am turning 44 this year and I love to paint and write and I am losing the ability to do both. I still have a little capability to write thanks to my wonderful companion laptop. lol but I can’t paint the way I used to that’s for sure! As far as traveling, unless your doctors flat out tell you that you can’t…I say go for it! And the med that you are on is probably an anti-malarial called Plaquenil. It can also cause more sensitivity to the sun, so make sure you are covered up or wearing sunscreen when outdoors. – IF it turns out that this is the medication that your doc has you on.

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  10. I was just diagnosed with MCTD last Thursday. I haven’t fully accepted it yet!! My PCP suggested CTD when he saw my swollen hands on a routine visit, did blood work and a positive ANA showed up so he sent me to a Rheumatologist for a workup. She sent me for blood work (they took about 10 vials) and I think she had me tested for every conceivable disease (TB, Lymes, etc). She said the ANA and the RNP were both positive, hands still swollen and useless as far as strength is concerned and unable to make a fist. I have other health issues, especially bone, joint, and muscle pain. I see a pain specialist for shots for my knees, facet joint shots, and more, but this was always attritubed to herniated disks and arthritis. However there have been a few times in the past that I’ve been told my blood work showed Lupus, but when tested further it revealed that I didn’t have it. I guess they never checked for MCTD. When questioned about my past health history, it turns out I have prob been having flareups at different times. I did have iBS earlier in life and endometriosis which i was treated for. I also had rotator cuff surgery 3xs, and I had a bout with pneumonia that landed me in the hospital for 2 wks the end of 1997 and took me almost 6 mths. to gain my strength back. And I had carpal tunnel surgery on one hand, so I’m guessing all these things are related from what I’ve read here. Now I have to have all these tests done-echocardiogram, sonogram, pulmonary function etc. so Dr. has a baseline to work with. Also have to have eyes checked bc these meds she gave me affect vision! I think it’s an anti-inflammatory med. Haven’t started yet bc it’s mailed to me. I’m 70 yrs. old, look and feel much younger, but most of these aches and pains started in my late 60’s. Arthritis runs in my family, so now I’m wondering if she tested for the gene. Only a few days in and I have so many questions and when I read that this is fatal, it blows me away…………Now wondering how this is going to affect my life. We love to travel here and abroad, I love to garden (and I mean down and dirty). I could stay outside for 8 hrs. and be happy. Now I can’t even pull a weed and if I do, it hurts . I’m rambling now and my fingers hurt, so off I go. I’m having trouble falling asleep-I’m tired but can’t sleep. Does anyone else have that problem.?

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  11. I want to add – unfortunately, we will never be able to completely turn down the pain and it won’t work every day but coping mechanisms and learning everything you can about MCTD helps you feel more “in control”.

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  12. I often feel this way but don’t get too discouraged. After finally finding a good pain specialist and rheumatologist, it is a little easier to get through my day.
    I can’t work anymore and I feel that eventually I will be in a wheelchair and that’s okay because I can always figure out a different way of doing what I need to do.
    The key is definitely to find a good team, a good PCP, rheumatologist and pain specialist and try and turn down the pain a little.

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  13. I was dx’d with MCTD in August of last year. I have joint pain in my shoulders and rib pain, knee pain and stomach issues. I have little to no energy by 3pm. I am 38 years old. I do not have discolored fingers. I feel that this disease is going to cripple me and leave me unable to care for myself. Anyone else feel this way?

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  14. 1. I don’t worry that little research is specifically done on MCTD. Research on lupus and scleroderma – particularly underlying autoimmune mechanisms, will apply.
    2. Everyone’s illness can be different from other people’s.
    For some people it is minor, for others very debilitating.
    I have serious ongoing digestive issues (difficulty swallowing, poor digestion of food, reflux, diarrhea about 1/3 of the time, intermittent sphincter issues). Muscle weakness so severe I could not get up from a chair. My hands could not grip a toothbrush, or a comb, nor flatten (that has actually improved), and were very painful. My feet hurt so much I could not put on shoes or walk. I have to see a pulmonologist since my breathing is impaired. My parotid glands get hard, swell up and are very painful periodically. Sometimes my joints are so painful I can’t walk.
    The level of symptoms varies, stuff comes and goes, about 10% of the time I feel quite well, 20% of the time I feel pretty good, almost normal, but as tired as if I had just hiked 10 miles. 1/3 of the time, I can barely do anything.
    I don’t want to scare anyone – but sometimes it is bad, and my rheumatologist says I am doing better than most people with MCTD.
    I am 60 years old, I have had autoimmune symptoms since I was 25, sometimes interfering with life, but never severe enough that tests were done (it was attributed to depression, hormones, hypochondria, when I got fat after age 40, then it was always ascribed to weight or peri-menopause). I was misdiagnosed with IBS when it was really endometriosis.
    By age 45, I was too disabled to work, and I loved my job. But it would be another 5 years before I was diagnosed with MCTD though.

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  15. I agree with you to a certain extent…you have to try and maintain a positive attitude when faced with a chronic illness. However, there are a lot of us that are facing multiple illnesses or conditions. There can also be different levels of severity in every case of MCTD, no two cases are the same. I personally have known people who have died from MCTD so to say that it doesn’t shorten life, is wrong…it can, not always…but it indeed can. Sure, I try not to dwell on all the negative aspects of dealing with autoimmune disease, joint and back disease and constant pain but it doesn’t often let me forget!

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  16. Well I hate to rain on everyone’s parade but I was diagnosed with mctd a few months ago and my doctor explained the disease but also reassured me that I will be fine as long as I do better at maintaining a healthier lifestyle. Treatment would be necessary if symptoms become an issue… I see a rheumatologist in a few weeks and that will be that. I refuse to scare myself into depression over something like this I am gonna live a full happy life and I am looking forward to having a family one day.People have to maintain positive attitudes in situations like this …mctd does not mean a shortened life…mabey a little pain in the tush every now and then but that’s all.Mental strength is 50% of all treatment… Guys c’mon -_-..

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  17. The hematologist and rheumatologist both said a positive Ana doesn’t mean anything. However along with having a positive Ana I also had a positive rnp and aside from iron deficient anemia , leukopenia and the last 2 years my fingers get so cold and stiff ( I joke that it has to be above 80 or their cold) these are really my only problems. The rheumatologist said I had him stumped. And that maybe I won’t develop symptoms ever it could be next week . I was just curious if anyone else was like me.

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  18. People can have positive ANA without specific symptoms. It is more common as you get older.
    Nobody really knows how common a positive ANA is in asymptomatic people.
    But consider, ANA is not a test that is done on a standard blood panel, it has to be specially ordered. Heck, many of us had trouble getting our doctors to do the test at all even when we had symptoms.

    (I should have had ANA tests 25 years before they were finally done. Earlier treatment might have helped. At the very least, I wouldn’t have been being told for years that it was hormones, or mental, or later after I gained weight that it was because I am fat, or being accused of seeking pain meds even though I never did ask for nor accept a prescription for them).

    So, the answer is, sure, many people probably have positive ANA without serious symptoms, and the titer of the antibodies can go up or down, and the number doesn’t correspond directly to your degree of symptoms and issues.

    But you do in fact have symptoms – Raynauds, joint pain, fatigue, and possibly others that are mild, or came on slowly so you didn’t notice (that was the case for me for “difficulty swallowing” – it wasn’t extreme, and it had developed very gradually).

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  19. I don’t know for sure if you can but I had Raynaud’s for YEARS before I had any other symptoms. I actually thought that it was “normal” so I didn’t think much of it. Then about a decade or so later, I was diagnosed with MCTD and Raynaud’s was part of that. I honestly didn’t know and my rheumatologist thinks that it is possible that one or the other tests would have come back positive because of the Raynaud’s presence.

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  20. has anyone here had a positive ana and positive rnp before they showed symptoms? I see a hematologist for iron deficient anemia and leukopenia. 7 years ago she checked my ana and it was negative but my white count went a bit lower than normal ( for me) so she checked again and it came back positive so off I went to the rheumatologist. he retested and it came back positive along with a positive RNP. currently the only issues I have is my fingertips get seriously cold unless it’s above 80 degrees and my knees have aching pretty bad. oh and of course extreme fatigue but I just blamed all these on low iron. however as off last week my iron levels were in the low normal. the rheumatologist said I had him a bit stumped, it’s a wait and see kind of thing. I wasn’t sure if anyone tested positive for ana and rnp without symptoms and if so how long was it until symptoms appeared? and is there a possibility that I could test positive for these yet never have a problem?

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  21. Your doctor may suspect mixed connective tissue disease based on your signs and symptoms. A physical exam may reveal signs such as swollen hands and painful, swollen joints, a history of Raynaud’s and have high amounts of the antibodies ANA and anti-RNP in their blood.

    I hope that helps! I took information from the Mayo Clinic website as well as Medicine.net for the actual lab tests usually done.

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  22. Thanks everyone for sharing you information. I too have a diagnosis of MCTD. It has turned my life upside down, but I am hoping to find d, me new normal soon!

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  23. I’m so sorry you are dealing with housing issues! That’s not easy even for a healthy person, let alone someone with a chronic illness like ourselves.
    I had also read, prior to this article, that MCTD wasn’t as serious as having one primary autoimmune disease. I believe they were talking about the actual symptoms not being as severe, who really knows.
    I know in my own experience with MCTD I feel as though it’s definitely progressive and relentless no matter what I try to feel better. I posted earlier how I have gone vegan and it has helped with my moods and helped some of the stiffness but the pain is always there along with the exhaustion that continues to weigh me down.
    I apologize for my negativity today, it’s been a particularly rough week.
    I truly hope you are able to another housing option that works for you soon! (Gentle hugs)

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  24. Our new normal, yes…you are so right! That is the hardest thing for a lot of us to accept. Thank you for following my blog Tamara! I look forward to reading more of your comments.

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  25. Thank you Laura! I definitely appreciate feather hugs! I hope you have the test done. They say information is power, but for me, information is a confort for sure.

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  26. I’m so sorry you are having to experience this. I just recently tested positive for RNP Antibodies and I’m totally confused as well.
    Best wishes!

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  27. I’ve got mctd too. I have my mind made up that I am a mild case and will either stay mild or go into remission. I know how to manage myself and my symptoms now and have learned my new normal. I love your tag line….living with limited spoons. I love your blog so far, will visit often

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  28. I too have MCTD.
    My rheumatologist, and the researchers at Stanford and UCSF indicate that most people with MCTD have better prognosis than folks with scleroderma or lupus. Perhaps they are diagnosing it sooner (than less experienced docs), when symptoms are less severe.
    I had health issues, which I believe are related (gyn & joint) for 20 years before my diagnosis, but once I got Raynauds and developed swelling in my fingers, I was diagnosed very quickly.

    I am RNP positive, and also positive for antibodies indicative of Sjogrens and lupus.
    I have ongoing issues, but I am actually doing pretty well: after losing 80% of my strength, I am slowly getting a little back, my energy level is OK most of the time (nothing like my previous high energy level though, and if I reach my limit I have no reserve and can pay for days afterwards), I don’t have the ongoing muscle and joint pain that plagued me for several years, for a long time I could neither make a fist nor straighten out my hands, now I can (although my hand strength is a joke and it’s very easy to overdo it) – my rheumatologist has asked “to what do you attribute your improvement?”
    I am doing very conservative treatment (hydroxychloroquine) combined with anti-inflammatory herbs and medicinal mushrooms. I have never taken steroids for my MCTD. If I had major organ issues, I would be more aggressive, but so far my pulmonary function, cardiac, and kidney function are OK.

    I happened to be a late-in-life college student taking an immunology course the semester I was diagnosed. I wrote a paper:
    http://bytewright.com/mctd.pdf

    Good luck to you! I hope you have supportive people in your life.

    I struggle with feeling lonely (I have been single for 20 years, in part due to the health issues).
    I now face a huge issue – developers are going to tear down the building where I live to build expensive new stuff. So, myself and my 16 neighbors have to find housing. And here in the SF bay area (where I have lived for 40 years), one bedroom in a house shared with 5 or 6 people costs 70% of my monthly income. A 1-bedroom apartment costs more than my monthly income. So, I am a bit stressed out right now.

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  29. Thank you for sharing this useful information. There are many who just want to have some kind of knowledge into what is going with their bodies. Information can bring a sense of relief to someone ready to give up.

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  30. My doctor has asked me to take this test. She just told me it was a more define test. This disease is very concerning. Sending you a feather hug and prayers for a healthier tomorrow.

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