UCTD is a real disease according to the doctors that you talk to and in the literature you read. However, when you read what it really means the disease isn't represented correctly, in my opinion. The literature makes it sound likes a it's a walk in the park, and I will tell you it certainly is not.
(Definition Incoming)
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(Cited at http://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp )
The term "undifferentiated connective tissue disease" (UCTD) is used to describe people who have symptoms and certain lab test results that look like a systemic autoimmune disorder or connective tissue disease. But they don't have enough of such characteristics to meet the diagnosis for a well-defined connective tissue disease, such as rheumatoid arthritis, lupus, or scleroderma. Thus, they seem to have another, similar disorder that doctors call undifferentiated connective tissue disease." Although the word "undifferentiated" sounds vague, rheumatologists know this term describes a real problem. It does not mean that your doctor does not know what to call what you have.
This undifferentiated category is distinctly separate from another group of vague-sounding disorders called "overlap syndromes." People with these syndromes have enough features of more than one connective tissue disease to meet the diagnoses for several at the same time. Thus, they "overlap" two or more diseases. (For example, mixed connective tissue disease [MCTD] is just such an "overlap" syndrome.)
In contrast, patients with UCTD will not have enough of the features of any one rheumatic disease to be firmly classified as such by the currently established diagnostic criteria. However, because they may have features from several known diseases, they are said to be "undifferentiated." (See Fig. 1)
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So to try and turn this into something a little bit easier to digest when you get the diagnosis of UCTD a doctor is saying that you have many overlapping symptoms of several connective tissue diseases. Which can include lupus, scleroderma, sjorgens, rheuamtoid arthritis (RA), polymyositis (PM), and dermamyositis (DM). Unfortunately because the UCTD patient has so many different symptoms they usually do not have enough of any particular connective tissue disease (CTD) to be diagnosed with any solid CTD.
One of the supports groups I am involved with on Facebook says " those in limbo ". I really do not know a bettor way of putting it. It's like the doctors are saying "yes we know there is something wrong with you, but we don't know what it is"
The truth of the matter is that the "name" of a disease shouldn't be what is important. It's that you are being properly treated for what is wrong with you. i would say most of us who suffer with UCTD are being treated for our symptoms. Here lies the problem though. When you go through insurance companies they want to know why something is being ordered especially prescriptions! My fellow AOSD sufferers know this well. AOSD is disease similar to Lupus and RA they treat with RA drugs but if a doctor tries to prescribe a drug for RA to a person with the clinical diagnosis of AOSD they get turned down for that med. The doctor has to say for the treatment of RA, sad huh?
This is the same reality for those with UCTD, by the way AOSD ( Adult-Onset Still's Disease was my first diagnosis that now has been replaced with the UCTD diagnosis.) Also another one is life insurance even though the literature claims most of those who suffer from UCTD will not develop the more complicated CTD illnesses. When a life insurance company sees the medications you are on for the UCTD. Many are getting denied for preexisting conditions, or being put in the hi-risk category. I've also been personally warned by those who suffer UCTD like me that if you start a job that offers long-term disability you may not be eligible for it.
So even though UCTD is viewed as real disease it really feels more like a diagnosis of convenience. There is no true criteria that is used across the board. Even though there is a table that is suggested. I am finding doctors are diagnosing UCTD without following this criteria.
Personal Story
In fact, when my doctor diagnosed me with UCTD she handed me a sheet that had the criteria right on there. 1st it says must have 2 positive unspecific ANA tests. (wrong)... The second one I noticed was anyone with a malar rash is to be excluded from a UCTD diagnosis. (wrong) again. Obviously, my own doctor does not follow this criteria and that seems to be the case for many others as well.
Here is the suggested criteria for an UCTD diagnosis
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Table 1. Preliminary Classification Criteria for Undifferentiated Connective-Tissue Disease
(I'm just going to Highlight what doesn't fit me here in the box)
| Inclusion Criteria | Clinical Exclusion Criteriaa | Laboratory Exclusion Criteriaa |
| 1. Signs and symptoms suggestive of a CTD but not fulfilling the diagnostic or classification criteria for any of the defined CTDs b for at least 3 years c 2. Presence of antinuclear antibodies determined on two different occasions | Malar rash Subacute cutaneous lupus Discoid lupus Cutaneous sclerosis Heliotrope rash Gottron papules Erosive arthritis | Anti-dsDNA Anti-Smith Anti-U1-RNP Anti-Scl70 Anticentromere Anti-La/SSB Anti-Jo1 Anti-Mi2 |
a Applicable to patients at disease onset
b Using established classification criteria for SLE, MCTD, SSc, PM/DM, RA and SS
c If the disease duration is less than 3 years, patients may be defined as having an early UCTD.
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As you can see I have I exclusion criteria and then I am missing one of the inclusion criteria. This is the print-out my own Rheumatologists handed me after my diagnosis. I was told that my overlapping issues were Lupus/Scleroderma/Sjorgens (and possibly RA as well, I'm starting to develop little nodules on my feet)
The funny thing is, to me. That I actually have more qualifying symptoms of Limited Systemic Scleroderma (LSSc) then I do for UCTD. I have found this is the case with many UCTD sufferers. It seems like doctors have found a little safe spot that they are sticking with. I'm sure this is done to make they do not give the wrong diagnosis, which I understand. However, it does leave those who suffer UCTD with a bitter taste in their mouth, and a fear of not knowing what is going to happen next.
So the bottom line is UCTD is in fact a real disease, and many are being diagnosed with it. However, this diagnosis doesn't answer a lot of the sufferers questions. We don't know if we will just stay the same of eventually develop into one of the main CTD categories like Lupus or Scleroderma. Neither of these are the greatest diagnosis's' in the world. So it is literally like being in limbo.
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