Hi all sorry to bore you with another post .I was on the phone to my rheumatologists secretary today ahead of my first appointment at the end of this month .
She had told me that it was mixed connective tissue that they were seeing me for ?
Ofcourse I googled this and am now worried sick ,prognosis doesn't appear good for some people .Does anybody here have any information on this condition as I'm really stressed having read about it .I had been looking up on lupus and it's a lupus clinic I will be attending but I'm even more afraid now after hearing that it could be this mixed connective tissue issue .
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Ryanmac84
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Hi Ryanmac84 yep I no exactly how you feel I too did the same thing Google,I have also mctd/ild mine has been going on for around 2half year now I actually put the fear of good in myself thinking this is it for me now until I though well I can go on like this what if and buts or deal with it I'm not saying it's easy ,and there are times I get poorly but there are times when I feel great as well just make sure you look after yourself best you can ,because I have mctd as far as I can make out its the rumathoyad arthritis that overlaps with other things I'm still learning it hasn't been made easy for us it's a lot to deal with and take in but you'll be OK think positive take care 😑
Hits thanks for replying back .I had just got my head around possibility of having lupus ,but it appears according to the secretary they are seeing me for suspected connective tissue problem or something ?
I have not been seen or diagnosed with anything yet ,still hoping that maybe it's something else auto.
My only blood test that was amiss was the Santidna test one which was high apparently .
I woudnt mind the problems that comes with it Dion ,if it was something that i could live with ?
We're you told that the condition couldl be managed with medication ?
Yes I take medication for my arthritis (mctd) and because I have the lung disease as well I get repeated lung infections the last one I was in hospital for 6 days I was sent home with antibiotics and steroids feeling a lot better I like you don't no what the future holds but I know it scares me ,but I have been told with medication it will and can be controlled I also have bipolar so makes it that bit harder because I can't have some meds u will be OK x
I suppose I haven't been diagnosed yet and I'm already panicking.Having read some of the symptoms like reynauds chronic heartburn and hair loss I have all these ,thats what's worrying .Is there a specific blood test that will decide wether or not you make mctd ?
I really don't no how all this works in fact I never heard of it apart from lupus until now and that's because my aunt had it the only reason I knew something was wrong I went to the dr an he sent me for a scan I ha an enlarged spleen and it went from there really bloods done then rumathoyd arthritis then came the ba dheartburn to the point I kept losing my voice now thankfully its treated I'm not saying its gone because it still happens just not has much but from that I got sent to a specialist who did the test on my lungs and that for me is were it began I'm waiting to go back to see dr to see what happens next ,I have heard people say don't have steroids unless nessaserry I don't no why ?maybe someone else can answer that I do hope you get the answers your looking for I always think because I have bipolar and so many times iv not wanted to be here an now the thought of what might /could/ happen I'm goning nowere take care.
All that REALLY means at this stage is that you have the signs and symptoms of some connective tissue disease but it isn't entirely obvious which. Sometimes they call it undifferentiated CTD - same thing, it's fairly clear you have some sort of CTD but no single one predominates and there are facets of more than one which can be identified.
I envisage a/i disease as a shop with a long counter with a load of shelves behind it, holding boxes of symptoms. You turn up and the assistant hands over a random selection - like a party bag. Sometimes they fit into an image that the doctors have recognised and written about in the past and given it a name: RA, lupus and so on. But in recent years with the advances in technology and medicine they can take a couple of patients with apparently the same disorder and see that, on the basis of blood tests and imaging, they actually have two different problems although the overcoat they are wearing is near enough the same from outside - the lining is a different colour. And that is also why there is no single answer to the treatment - we are all different and different drugs work better for some than others.
Thanks for the response .Well I was told that all my other bloods are ok and the only one which was not was the anti s DNA test which I think may have been 25 if that makes sense .?
Is it a good sign that all the other bloods were ok ,or does it more likely mean I will have to wait and have other bloods ran on me when I attend the lupus clinic ?
I'm sure they will do a whole load of tests - because some aren't available to GPs and the average GP wouldn't know how to use and interpret them anyway.
In the meantime don't panic - wait until they work out what it might be.
My thinking is that all auto immune rheumatic style diseases need a better naming or classification system. MCTD seems no more serious than lupus but seems to be a variety of symptoms of several disease types. A flavour of them all so to speak. Which really means that it's a classification issue based on current thoughts. Even lupus presents differently for everyone.
Mixed connective tissue disease (MCTD) is an autoimmune disease that is considered to be a cousin of lupus. We published a factsheet on ‘LUPUS: and Mixed Connective Tissue Disease’ which discusses symptoms, complications and the treatments available for MCTD. To read this factsheet, please click here: lupusuk.org.uk/wp-content/u...
Sometimes, certain situations can be overwhelming which is why talking to someone can help relive worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk .
Good luck for your upcoming appointment, please keep us updated.
Hiya thanks for taking the time to reply .Yes I'd like to speak to someone who knows abit more about the process etc .
When i first heard of the possibility of lupus was in July when my respiratory doctor had ran tests on me ,a letter was sent out to me telling me I had to go for repeats and to check for other conditions .It said that I had high levels for a gentleman of my age .
I later found out from that doctor that the test was an s anti s DNA test .She explained to me that it was used to indicate lupus .
She repeated the test and apparntly it had came down but was still high and referred me onto a rheumatologist .She said that she wasnt saying that she thought I definitely had lupus ,apparently all other tests were ok. But the reason she had ran the tests was because of a lot of the other symtoms and conditions that I'd complained of .
Chronic heartburn despite being on ppis ,raynauds ,some hair loss etc .Ive a couple of busted blood vessel spots on face and nose .Dont think I have the rash tho .
When I read online about the lupus some of it seemed to fit ,other symtoms not so much .
Then when I rang the secretary for the lupus clinic she had told me that they were seeing me for the possibility of connective tissue. So I started to get confused about what exactly it is that they are suspecting I may or may not have .
She said that they would be able to run other tests to determine whether or not it was those conditions or not .Is this true ?
She also mentioned something about six weeks ?I think she said they would know six weeks later what exactly it is or isn't .Does taht ring a bell
Lupus presents differently in everybody, therefore it is rare for two people to share the exact same symptoms; not everyone will experience a rash. According to our booklet ‘Lupus and the Skin’ (lupusuk.org.uk/wp-content/u... only about two thirds of people with lupus will experience skin involvement.
Lupus itself is a connective tissue disease. At the moment it sounds as though they suspect that you have some form of connective tissue disease, but they need to run further tests to confirm which.
For many, to gain a diagnosis of any connective tissue disease is difficult and this is still the case for MCTD. As the immune system is over-active in these conditions, most people with MCTD will have positive anti-nuclear antibodies (ANA) and also antibodies to ribonuceloprotein (RNP). The Lupus Encyclopedia states “many people who have SLE are also positive for RNP antibody and do not have MCTD”.
The specific antibody for MCTD is called Anti-U1-RNP; this is what you are likely to be tested for , as part of an ENA (extractable nuclear antigens) panel looking for autoantibodies found in lupus-related conditions.
We are not medically trained therefore I am unable to comment on why a time frame of six weeks may have been mentioned. Are you able to contact the secretary about this?
Hi thanks again for the reply .Im abit confused about the six week statement from the secretary ,I think maybe she was referring to blood tests I'm guessing it would take six weeks for certain bloods to be done ?
I was talking to a woman today at a funeral whos a friend of a relative of mine and had hear that I was being sent to the rheumatologist .She told me her sister had lupus and mctd .
Some of her sisters symtoms sound about like mine blepharitis and other problems although I have joint problems mine woudnt be as severe as hers sounded !Im only afew weeks a cple of weeks away from my appointment last week of September so il maybe hold off on ringing the secretary until then .I woudnt mind a chat with somebody like you said maybe tho
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