Yesterday taken into hospital for suspected brain bleed, aneurism. One protein for inflammation very high. CT scan nothing, even though a vein was prominently sticking out of temple, hence why GP made me go to hospital emergency.
I take vitamin D, light sensitive, and hydroxchroquine. . (Can never spell it)
More symptoms of lupus and Sjogrens but don’t understand why isn’t not Lupus given the “ticking of diagnosis”. Not that I want Lupus.
So what is Undifferentiated Connective Tissue Disease?
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Bigdave79
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UCTD is when the patient displays symptoms that could be CTD but doesn't fit into the categories for any specific one to be diagnosed. It is an affirmation that you have something affecting connective tissue - but it isn't one thy are willing to give a specific label to.
My personal view is that almost ALL autoimmune disorders are somewhere on a spectrum of symptoms - sometimes you might have enough of one to tick enough boxes to get a label. Or nearly enough plus something they think unusual and then they qualify it as "atypical". But I think you have "Bigdave79" syndrome, and I have PMRpro syndrome. And as technology gives so many more insights into the disorder you have - more of us will get something more general as our label!
Doesn't really matter at present - they can't cure any of them, they just manage symptoms and loads of them crossover.
Yes, good way of putting it. But at least you have been accorded the honour of it being real and they know that - instead of it being insinuated you are a hypochondriac!!!!
Like your expression “crossed the line.” I was really surprised when I asked my rheumatologist what percentage of his practice was lupus vs undifferentiated connective tissue like me and he said 10 to one undifferentiated to lupus. 😮. He elaborated that rheumatologists now think of lupus as the top of a pyramid with many varied syndromes and combinations underneath.
Hope that helps. When you get this concept, you may be less concerned about overall name and focus on specific symptoms and treatment.
By the way I remember the day I « crossed the line » after being watched and work up for a year and a half.
I don’t know that much about PMR but they are meeting to discuss the possibility of developing a diagnosis for lupus that may be on a spectrum, so it may be happening in other areas.
We had a meeting in London discussing the concept of a spectrum a few weeks ago - I joined it online. Was so much there I wanted to discuss. My rheumy from here was Chair, with Dasgupta and Sarah Mackie from Leeds who are the UK leading lights and way ahead of most. I've been saying this about a/i disease for about 10 years. It can't be as simple as different boxes ...
Great answers here from PMRpro and others. My tuppence is that I think UCTD can also turn into one full blown rheumatic autoimmune, only one of which is Lupus. I think I’m right saying that UCTD tends towards RA, Lupus and Sjogren’s - possibly Myositis as well. So these are the three ctds it can evolve into. MCTD is slightly different in that it has its own antibody and can evolve into Systemic Sclerosis, Lupus or Myositis.
It took 12 years from onset for me to get diagnosed unequivocally with seropositive Systemic Sclerosis. Until last year it was called Overlap Syndrome. My Sjogren’s has just been downgraded by my rheumatologist to Sicca Syndrome - which is daft - although her intentions were good. She’s trying to make the point to my surgeon and other consultatants realise that seronegative Sjogren’s is no longer my main AI disease. Someone forgot to tell my Sjogren’s though as my mouth and eyes have recently got extra dry and I’m getting migraine from the brighter days and hospital lighting. I never had migraine when I was young but my neurologist has just confirmed I have Sjogren’s related aura migraine. So I have Old Ted’s migraine with a hypermobile spectrum disorder version of Old Ted’s Scleroderma, Raynauds, Sjogren’s, Gastroparesis and Erythromelalgia.
Yes, I think it is twenty percent of UCTD go on to develop a clear cut autoimmune disease. There are certain features that clue them in but in the end everyone has to be watched. Watched, always watched at every phase, right?
hi Kay .I had ophthalmology appointment today whom suspects myasthenia and said ice test is diagnostic and that my other problems could be autoimmune as come together and possibly mctd 🤷♀️
wow 🤩 - this is big. I have been pushing you to go to a myasthenia expert, as you know, not that I know much about it but just that I thought you were owed an expert in case you were a rare person with negative antibodies.
I am stunned, to be honest, that the Opthalmologist was this certain. OMG, how were you not referred years ago?
Thankyou yes she said if not asthenia though she suspects it then a myasthenia related syndrome but has promised to help me and my daughters similar symptoms and going to be seeing us both and redoing some tests herself. I have requested ophthalmology numerous times over the years and been turned down flat refused and refused the ice test.She said steroids would have helped other symptoms but would not have helped the mg as a different drug needed and thats why no improvement with eye and hydroxy could have awakened it.At least I now have a way forward and she will be looking into the severe blue eyes I get with brown areas and giving me a place to be seen as soon as it happens rather than wait then its gone 🙏
Welcome to the UCTD club! I’ve had this diagnosis for over 20 years. At first I was told it’s mild in all cases but attitudes have changed a bit. I’m a little different as most of my first symptoms were Scleroderma related and for years I had the RNP antibody which some rheumatologists call, or did call MCTD. One thing above all others which has happened throughout and I’m grateful for is I’ve been checked annually. My friend who became ill in her 20’s about 10 years prior to me has same (now disappeared) antibody but was always classed as having MCTD. They now say hers is more Scleroderma but she had the Rheumatoid arthritis type when young. They now say I’m moving towards a Scleroderma diagnosis because of my gut, bladder, automic nervous system problems and Erythromelalgia. Luckily my Raynaud’s is not so severe for Systemic Sclerosis.
It is a bit of a roller coaster as you sometimes leave your annual appointment with a different diagnosis but I have some sympathy with the Rheumatologist’s as we all love boxes but these diseases are so different in every case.
All of this is very helpful. Thank you. I also have sicca syndrome, and had been tested for Sjogrens with a minor procedure. The one where they snip out small buds. That was negative.
With everyone’s contributions I understand this better. Thank yo7z
Yes, they can’t just worry about the box. They have to worry about the heart, the kidney, the brain. We are all unique and they have to pull all that together to understand us.
Bigdave79… know exactly how you feel as I’ve recently been categorised with UCTD after many years of what appreared to be unconnected symptoms.
Love the “spectrum” concept highlighted by PMRpro and also came across this paper, which whilst quite US focused explains this idea further and future plans to change diagnostic criteria
Just got back from a neurology appointment. I brought up exactly what we are talking about and told him my rheumatologist’s way of talking about these devils. His hands told the story! The various combinations that comprise undifferentiated connective tissue disease is way more common than classic lupus. I wonder if that is the case for scleroderma, myositis and all the other autoimmune diseases.
And he explained how the lupus classification applies to neurology. Hey, if you are not a subtle thinker, don’t treat autoimmune patients.
I saw my neurologist for review yesterday and asked her if she wanted to finally discharge me now that my main disease is proven to be systemic sclerosis. She said no woukd like to keep me because it’s interesting for her to have a patient like me (I seem to make her smile a lot!) and she then diagnosed aura migraine - which apparently is very rare finding in a patient who didn’t have these when younger but we guess it’s CTD related. Anyway I’m now wide awake at 1.30am in hospital for colostomy surgery tomorrow. I ended up having a massive reaction to the fluorescent lighting on the ward and was finally able to explain the vomiting and seeming blindness to nurses who were really kind and turned out the main light in front of my bed. One woman asked me if I had lupus and I said no I have systemic sclerosis and Sjogren’s and aura migraine - she said never heard of these but said it was my scarlet cheeks and broad brimmed sun hat (forgot to bring shades) that made her wonder! Interesting in the context of this discussion? 🤷🏼♀️. I admit that I find it a relief to be able to say what’s wrong with confidence after many years of misdiagnosis x
Ps awake because it’sfreezing on this ward as a patient insisted on opening the window and it’s powerfully windy out there so I’ve now got all my clothes on and even thermal socks!! No one dares to close it because she really shouted at the woman opposite for complaining - yikes hope she’s gone tomorrow night as I don’t think I’ll cope with the curtains flying after major colorectal surgery!!! 🤦🏼♀️🥶💨😂
For me and many others lupus can NEVER be a simplistic tick box exercise but clinicians and most others love to slot diseases into degrees, categories and types? Far too complex! Just look at the hugely diverse number of posts, comments and queries on these fora. Perhaps there’s a need to classify in meticulous detail rather than simplify?🤣🙄
However the tick boxing mindset is so sadly prevalent!
Firstly Lupus has so many manifestations, symptoms, degrees, grades and presentations from all sorts of eg from coloured rashes, joint pain to serious organ involvement: brain, heart, kidneys etc eg lupus nephritis (or more correctly described glomerulonephritis)!
As the famous Professor Graham Hughes (discoverer of APS=antiphopholipid syndrome) said, “It’s (lupus) a great imitator and baffles most”! He also said “It’s a sort of self allergy whereby one’s own immune system attacks cells, organelles (components within cells), tissues, tissue systems, organ systems etc.
With me even the acronyms are baffling:🙄🥹😳
MCTD= mixed connective tissue disease ?🧐
UCTD=undifferentiated connective tissue disease?🧐
CTD=connective tissue disease
DLE= discoid lupus erythematosus
SLE=systemic lupus erythematosus
SCLE=subcutaneous lupus erythematosus (on the skin but below the skin?)
APS=anti phospholipid syndrome (red blood cell membranes being attacked by white blood cells and antibodies)? Aka Hughes syndrome.
Etc etc…(do docs/labs use the same diagnostic criteria?)🧐 I wonder.
The most important point for me is that if you’ve been diagnosed with ONE AI (autoimmune disease), they ALL sadly start knocking at the door.😱Sad but true.
In my case type1 diabetes, NOT be confused with type 2 which is lifestyle related (diagnosed 35 years ago) followed by DLE (2014/2015), SCLE (2015), Lupus nephritis (2016) and vasculitis now in remission, autoimmune alopecia , psoriatic arthritis…
I’m thinking what’s next?
Will it be MCTD or UCTD or a bit of both according to which lab is used and what what blood results are categorised as “normal”?
My pile of letters now 6” high are all copies from various NHS consultants working in nephrology, dermatology, endocrinology & diabetology, rheumatology.
Not a single lupus diagnosis was from a GP . 🧐
IMAO they’re all simply not trained well enough in diagnosing AI let alone differentiating between them! Pun intended.🤣
Even with the “spectrum “ theory/hypothesis (imperfect) for lupus can we simplistically liken lupus to a category of electromagnetic wavelength? Most physicists will agree that uv, ir, visible light, X-ray etc are ALL part of sunlight? Surely the analogy is too simplistic?
Add to all this the ideas of RELAPSE, REMISSION and temporary/semi-permanent flare ups and it gets even more complicated.
Nb blood is a complex liquid tissue so is APS one disease or many?🥹😳After all most cell membranes are potentially liable to attack from autoantibodies and T lymphocytes?
Another Q: when does CTD become or morph into UCTD or MCTD and vice versa? Anyone!🧐 mixed tissue? Undifferentiated tissue? Do histologists know the difference?👆Which tissues in which organ or are they spread throughout the body?👆
.?.? There you go…factoring in stress hormones and it gets even more complicated. Some will argue vehemently that Sjögren’s is not lupus and vice versa! I say it’s all part of the same family.
As for the term “latent” which in my dictionary means hidden/yet to come does this also mean that it is a manifestation of lupus which has yet to be formally diagnosed by the docs, yet so many on here are suffering classical lupus symptoms and being ignored?🧐
Like all other aspects of connective tissue diseases, that is variable. People like me who are diagnosed with undifferentiated connective tissue disease are told that if they stay in that state for a couple of years, it is likely they will stay that way. But that doesn’t mean we don’t get New symptoms or even get better.
I will let someone else speak to MCTD. I am not as familiar with that diagnosis.
As a foot note to all this and to show just how confusing for us all these conditions are according to this link that PMTpro posted, I definitely have MCTD as I have been told I had very high levels of RNP antibody and nothing else. Having read the symptoms it sounds like me too. This is what my friend who has had this for years is quite convinced I have. 🙄! She was diagnosed at St Thomas about 10 years before me. One thing for certain is both of us have symptoms more of Scleroderma now. But quite different symptoms to begin with. No matter, I receive good care and checks so that is the main thing.
thank you all. I guess we are all looking for answers and I suppose boxes and categories help us understand. What I have concluded is that this field of medicine is very personal to you, your journeys and battles, and the odd things that pop up. I have learnt more from you guys this week than the last 6 months since diagnosis.
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