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AprilM

Undifferentiated Connective Tissue Disease

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Hello.  First post here.  I am having some concerning symptoms and blood work and my various web searches have brought me to this forum.

 

I am 42 years old and have had Hashimoto's thyroiditis for about 25 years.   I have been taking thyroid medication since then and have monitored it closely.  

 

My current symptoms are mild Raynaud's, mild dry eyes/mouth and fatigue.  I also have a serious case of Oral Lichen Planus which began about 3 months ago and is only getting worse and more bothersome. I am prone to tendonitis which resolves with rest. I do not have any skin thickening, joint pain, digestive or lung issues at this time.  It was the Lichen Planus that caused an ENT to check my ANA and when that came back positive I saw a rheumatologist to investigate further.

 

My blood work shows a low positive ANA (1:80), positive ACA (around 3), Hashimoto's antibody (can't remember the name) and deficiencies in the c3 and c4 complements (associated with lupus). I am negative for all of the antibodies that typically point to Sjogrens or Lupus.

 

My rheumatologist just gave me the diagnosis of Undifferentiated Connective Tissue Disease (which from what I understand means she doesn't know what is going on but it could turn into something specific in the future).  She is most concerned about the low complements.  She was not particularly concerned about the ACA which surprised me. I find that very scary from what I've read! She says that the Lichen Planus is unrelated and says it should just be treated with steroid creams.  But Lichen Planus is also an autoimmune disease from what I understand.   I am going to re-run my blood work in early Jan and then see her again to consider whether or not I should go on Plaquenil.  She said it might help with the fatigue and possibly prevent some problems in the future.

 

At this point I am feeling very lucky that I am not feeling too bad but at the same time I am scared about what the future holds. I have 4 young kids and I'm worried how this might impact them. I know that no one can diagnose me over the internet but if anyone has any insights or suggestions on what I should ask my doctor, or perhaps additional tests I should ask for, I would be very grateful.

 

Thank you so very much!

 

 

 

 

 

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Hello April,

 

Welcome to Sclero Forums!  I'm sorry you have UCTD.  Most unfortunately, often wait-and-see is the only way they can sort out autoimmune diseases. About half the time, the symptoms and test results remain so confusing that UCTD always remains the primary diagnosis.

 

As it happens, I had the UCTD label for a long time, before things sorted themselves out.  I found it a bit nerve-wracking to think that the entire world of autoimmunity was open to me, with absolutely no idea as to whether my symptoms at the time were all it would ever be.  I wanted to avoid worsening of anything, if I possibly could.  I felt this sense of urgency, to properly diagnose and treat, so I was alarmed that my doctors were just like, oh ho hum, maybe someday we'll figure this out.  If we're in the mood for it. Maybe, maybe not.

 

For some reason, people who haven't had UCTD, seem to think of UCTD as being this rather mild, seemingly harmless label; like it is a great improvement over having lupus or scleroderma or rheumatoid arthritis. But from my own experience, I can tell you that I actually felt better once they began defining more specific diseases out of the UCTD mess that I was in.  It's like then at least the range of possibilities was narrowed a bit; I could focus on that disease, seek treatments for it, and know where I "belonged", with more certainty, in the realm of patient support.

 

Right now, what I can tell you is that you've come to the right place for support, whether or not you remain UCTD forever.  We understand the difficult process of living with disease, of wondering what disease it is, of trying to hammer it out with logic until we find the right information and resources to deal with it, as best we can.

 

Please bear in mind that I'm not a doctor, that I have no medical training at all.  Just in general, women with scleroderma face an average of six years of wandering in the wilderness of odd symptoms and perhaps even odder test results, before diagnosis. This includes well-balanced, intelligent, educated medical consumers, such as you, who seek the best information and support for their condition.  And this can happen even to those who seek expert care; sometimes they still need to be monitored for years before certainty finally arrives.

 

All that said, if I were you, and had a doctor who didn't seem to care about anticentromere antibodies and Raynaud's (etc), I'd probably do the January follow-up and then decide whether or not I thought it was time to see a listed scleroderma expert.  The reason I say this is because the average rheumatologist may only see one or two cases of scleroderma in their entire career.  So it's not at the top of their radar.  However, scleroderma experts pretty much know (or privately suspect) scleroderma when they see it, and so they can sort out the differences between, say, lupus and scleroderma, or even sclerolupus, more easily than a "regular" rheumatologist.

 

But you need to bear in mind that this is not a quick and easy thing, even with experts.  The harsh reality is that you may still be UCTD for years.  And that has nothing at all to do with you or your doctors....it's just that autoimmune diagnosis can be THAT elusive.  But please, no worries.  You may lay them down and rest them here in this forum.  Because regardless, come what may -- we will be here for you.

 

:hug-group:

 


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi April,

 

Welcome to these forums!


I'm sorry to hear that you're suffering with Hashimoto's Thyroiditis and also have Lichen Planus to contend with as well. I can understand your concern as to the prognosis of these diseases, especially as you have a young family to consider.

 

As Shelley has said, the road to a definite diagnosis is paved with good intentions and autoimmune diseases are very difficult to pin down, as there are so many variations to the symptoms. I would add that blood test results, although useful in some ways, are not the be all and end all of a diagnosis, as it is perfectly possible to have positive blood tests and yet never go on to develop the full blown disease. The reverse is also true.

 

I've included a link to our medical page on Undifferentiated Connective Tissue Disease, which I hope you'll find helpful and I would also agree with your idea of repeating your blood tests in January and then take it from there, as to whether you consult a listed scleroderma expert.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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The only thing I would add is that as there seems to be no cure for autoimmune diseases yet, they can only treat the symptoms, so in some ways, it doesn’t seem to matter which variant you have, the treatment is likely to be the same.

 

We can only hope for speedy progress in research.  It looks like some kind of stem cell treatment may be promising in the future.

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Hi April, 

 

My son had the initial diagnosis of sine scleroderma, from his rheumatologist, based on internal involvement, fatigue,  and positive blood work  (ANA, anti-RNA Polymerase 1/111, etc). When he saw the scleroderma specialist,  he said UCTD because he didn't  have other symptoms for scleroderma - namely Raynauld's, nail fold capillary involvement, skin involvement, etc.  Needless to say, having the UCTD is not any less severe than having the scleroderma *title*. He was started on Plaquenil initially and that did seem to loosen the esophagus for a while and helped with the fatigue.  No matter the name given, symptoms are treated as they develop and progress.  

 

You asked for suggestions about other blood work.  You already have 2 autoimmune diseases.  See if your doctor will do a complete Immunology panel for your IG levels and whether you have low counts for fighting infections.  Some doctors are seeing a relationship between immune deficiencies and autoimmune diseases.  Gareth receives monthly IV Ig infusions because of his immune deficiencies.  IV Ig is also being tested as a treatment for scleroderma in some medical institutions.  

 

Take care everyone,

Margaret

Mom to Gareth, 29 years old, DS/ASD

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Hello. My name is Kim. I'm a 36 year old nurse from North Carolina.

 

I gave birth to my third child in July of 2016, and when my periods started back the following March (as I was exclusively breastfeeding), my autoimmune disease reared it's ugly head. I am also diagnosed with undifferentiated connective tissue disease. Except for when I was on Prednisone for the better part of nine months, I don't feel like I have had any sort of remission from my symptoms. I have severe joint pain and debilitating fatigue. Some days are better than others, but lately, they seem to be getting worse. I feel like I am mourning the woman I used to be. I feel like a lousy wife and mother.

 

My lab results have only shown a positive ANA on three occasions. All other antibodies have been negative. I was found to have a very low ferritin level, and required two iron infusions. I was also noted to have a low vitamin D level, which I have gotten up to a therapeutic level supplementing at home. I am currently at 71.

 

I am here because I am so discouraged. My husband is a wonderful support, but he doesn't understand what I am living with. He is a Type 1 diabetic for the past 25 years, and I feel he has too much on his plate to deal with my problems as well. I have pain in my shoulders, feet, hands, lower back, and neck. I never feel rested. I wake up each morning with sandpaper dry eyes. I am a child of the sun, and have loved the beach from the time I could walk. However, I have noticed lately that I cannot be exposed to the sun. I was in the sun for two hours this past Saturday for my eldest son's soccer game, and I still feel as though I am in a flare today.

 

I am really just looking for some support. I appreciate you all listening.

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Hi Kim,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with so many unpleasant symptoms and are finding things so difficult at the moment. I would just say that although some your blood tests appear to be negative, that doesn't necessarily mean that you do not have an autoimmune disease, as blood tests are only a small part of the diagnostic process and it's possible to have positive tests and yet not develop the full blown disease, or as in your case, vice versa.

 

I've found another news item thread on Undifferentiated Connective Tissue Disease, to give you a little light reading and which I hope you'll find interesting.

 

Kind regards,

 

 

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Kim,

 

Welcome to Sclero Forums.  I'm sorry you have UCTD.  One thing many people don't realize in time is the potentially devastating effect of a new or chronic illness on all relationships, but most especially the closest ones, like marriage. 

 

I was extremely fortunate to get patient education classes,when I first became the most seriously ill.  They pointed out the hazards our relationship faced and gave us the skills to improve our relationship rather than morosely sit and watch it idly self-destruct. 

 

Part of it was learning new ways to communicate, so as to get my needs met without being a constant drag. We began communicating with a number system, like I could just say my day was a "1" (in bed all day, wheelchair bound, managed to stay alive but that's about it) or a "10" (at the start, a "10" for me was being able to get showered with fresh pajamas. The scale would gradually change as my abilities went up or down). 

 

I learned how to ask very specifically for help, and never assume anyone knew what I needed at the moment. Rather than think, if he really loved me, he'd know I have a headache so he should keep the volume down, or do the dishes, or whatever. Turns out, that's a sure-fire way to end things quickly! Unless they are a certified professional psychic, there's no way any other person can know exactly what we want at any given moment unless we tell them precisely. 

 

So I learned to be direct, and say, as pleasantly as I could, "I'm so happy to see you! Today is about a 2 for me. Please do the dishes and keep things quiet around here, as best you can. Thank you for getting me my meds, I really appreciate it!  I'll rest up, and hopefully we can go out to coffee tomorrow night."  So it wasn't just about me; it's acknowledging them, thanking them, letting them feel like every little thing they do matters, because it surely does! 

 

Also, of course, I never lied or exaggerated about how my symptoms were at the moment, so he knew I was never trying to wiggle out of responsibility. It's painful to not be able to do what we used to.  I had to learn a great many things to make a successful adjustment both for me and for my marriage. 

 

I supplemented that training with some personal counseling and every once in awhile, I go back to counseling, even now.  It's impossible for any of us to get too resilient in the face of undesirable changes.  I wish you well as you gather the resources to adjust to this life change.  You can do it, absolutely -- but I must say, I've seen all too many fantastic good-hearted people with otherwise healthy marriages fail to realize they needed guidance to make it through such turmoil. 

 

There's a lot of hope for you, though, as you can already see and sense the danger and you are reaching out for help to deal with the impact on you and your family. 

 

So, please keep reaching out until you find the tools and skills to help you successfully navigate through some rough waters. 

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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