Newly diagnosed and totally confused

[Cherrywerry]

Hi

I have recently been given a diagnosis of Undifferentiated Connective Tissue Disease.

After a bout of gastroenteritis 4/5 yrs ago I started to experience pain and stiffness in my shoulders and hips I though I had bursitis . All blood tests and X-rays came back negative minus a weak positive rheumatoid factor - I was diagnosed reactive arthritis.

For the past year my symptoms worsened with horrendous mouth ulcers , reynauds in fingers and toes , chilblains , and constant recurring UTis ( E. coli + every time !!) as soon as one UTI ends another begins!! multiple strep infections in throat , severe fatigue , pyrexia, Neutropenia showing in blood tests. Weirdly all my symptoms occur at the same time, this drains me .

My gp sent me back to the rheumatologist .

Blood work showed only that my neutrophils were low, and I had a high positive ANA test.

My DS.DNA test was negative . I was told that had it been positive along with my ANA I would have been diagnosed with SLE ( lupus) but as it was negative I am diagnosed with Undifferenciated Connective Tissue Disease.(UCTD)

I have been on hydroxychloroquine for the past week , I feel very sick weak and tired . I've been assured that this will pass in a couple of weeks .

I feel totally confused and really alone . I don't know anybody that has UCTD. I don't know if it is even considered to be a real illness and taken seriously by doctors? Nobody that I know has even heard of it before which is frustrating.

im really struggling work wise at the moment as in the past year since my new symptoms arrived I just so happened to have a change in work area. I work in an NHS hospital . I have raised my concerns with my employer and requested to move to a quieter less infectious area as I feel that there may be a link between the area that I'm working in and my worsening condition but I have been met with difficulty. Again even though I work in a hospital , my condition isn't understood by any of my managers, HR team or even occupational health dept.

My collegues have been less than kind about my decline in health as I've been off work on multiple occasions and because of the nhs sickness policy I've had to come to work during periods of monitoring in some appalling states eg: when I have had a UTI and strep throat occurring at the same time and am unable to get to the doctor for antibiotics. I feel like I can't win , if I'm off work sick I come back to an awkward atmosphere and cruel digs about 'what's wrong with me this time' and if I come into work when I'm ill (because I'm threatened with termination of my employment if I take anymore time off) I'm made to feel bad for being unwell or looking like I'm just 'trying to get out of working' my shift.

When my bloods have shown that my white cells are low and I have raised it as a concern for my safety I have been given no alternative but to work with patients with infectious diseases ( eg: swine flu, meningitis , Norwalk virus, c.diff)

I tried to discreetly raise this concern once before the start of my shift and was told publicly in front of the entire nursing team "why are you here when you know that we have these infectious illnesses on the ward? Should you even be here?"

A member of staff was then asked to swap sections with me ( in front of the whole team again), she sulked and said 'if I really have to ' I felt so embarrassed and petty that I said I would just carry on as I was.

Really I shouldn't have been there however I am subject to disciplinary action and possible termination of employment if I take any more time off work.

I was told a few weeks ago that I had been allocated a position in an area that was perfect for me - smaller area and less infections this was great news !

Then I was called up on my annual leave to be told that funding had been stopped and this move could no longer go ahead unless I had it in writing from occupational health that I really did need to move area on health grounds . I went to occupational health who did back my reason to move area . I was then told that it would not be possible again as funding for my particular role was not going to be granted in that area . I have now been offered an alternative that is just as busy and just as infectious as the area that I am currently working in!!

I have involved the union as I am sure this is unfair ( to offer me a new position then retract it 3 days later) and will remain off work until my sickness settles wth the new medication and a suitable alternative has been offered .

Has anybody else had a diagnosis of UCTD?

I would love to hear from you , your experiences , how it makes you feel, how you cope ?

Is it normal with only UCTD to feel so unwell and drained/exhausted all the time ?

Do I have any employment rights regarding UCTD ?( is it considered an actual illness?)

Has anyone else had any experience like myself in the workplace? If so what did you do , how did you overcome it?

If there's anyone out there that can identify wth the things that I've mentioned , please , PLEASE could you reply if you have the time , I'm desperate to know that there are there people like me that actually exist and that I'm not just going crazy or being a baby.(as that's how people who have no understanding of this illness make me feel when I try to explain how it affects me )

Thank you for taking the time to read my post

😊

[EOLHPC]

Hello cherry & welcome...please know: you definitely are not being a baby & you're definitely not going crazy...and yes, it is "normal" to feel poorly in the way you're describing. sadly, many here have wondered pretty much the same things you're wondering at one point or another in their health odyssey....mainly cause family, friends & coleagues & certainly gps just aren't aware of these relatively rarer conditions classified as immune dysfunctions & connective tissue disorders...+ many of us suspects these rarer conditions are simply all variations on a theme which the medical fraternity just hasn't gotten very far at figuring out 😏...

Myself, I was diagnosed with infant onset lupus in the USA but my mother never told me, so when I moved to the uk at 21 the NHS inherited me unaware of the diagnosis. The NHS then spent nearly 40 years saving my life during emergencies & diagnosing + treating my loads of multisystem secondaries but never connecting the dots enough to realise immune dysfunction & connective tissue disorder was underlying almost everything....partly cause conveniently they used my spine condition as a scapegoat....even though that left loads of my probs unexplained 😏.

Now am 62. It's 5 years since my brilliant NHS rheumatologist figured me out...last year she referred me to immunology due to my lymphopenia & hypogammaglobulinaema...now we've discovered I also have an early onset primary immunodeficiency (which began before my treatment with immunosuppressants for lupus) and explains my predisposition to complex persistence pattern infections (inc UTIs). Rheumatology + immunology treatment plans are giving me back more resilience & stamina + less pain than I've lived with since my early 20s 🤗.

My feeling is, that a less lupus-experienced consultant probably would've begun my diagnosis & treatment process 5 years ago with a provisional diagnosis of mixed or undifferentiated connective tissue disorder, and gone on to revise that label as treatment & monitoring progressed. There are quite a few here on forum with your sort of diagnosis at the relatively early stages of this process👍. Many of us test seroneg! The trick is to be considered by an experienced clinician who is a True Detective skilled at reading the signs recognised from medical history + clincal exam + lab tests

So, am somewhat identifying with your descriptions..and am hoping your consultants are experienced in immune dysfunction & connective tissue disorder...not all actually have the expertise we need. If you're wondering the same, I suggest you send a Private Message to Paul_Howard here on forum: he is our Lupus UK staff member & can help you. And please do go to the Lupus UK website & check out the publications for down loading: there is info on your sort of diagnosis in there:

lupusuk.org.uk/publications/

NB the last leaflet no18 is about MCTD I think...and below that there is a booklet giving workplace advice

I'll hand over to others for workplace reactions & advice..I was forced into early retirement due to health 20 years ago (it was VVV scary, but turned out to be one of the best moves I've ever made)

Are you open to hugs? Cause am sending you a big gentle hug...am v glad you're here

🍀🍀🍀🍀 coco

[Cherrywerry in reply to EOLHPC]

Dear Coco

Thank you so much for taking the time to reply to my post , I really REALLY appreciate it 🤗

The Lupus information link that you sent is great , thank you again.

I still am unsure if I should or rather have the right to apply Lupus related information to myself as I have this different diagnosis, the 'incomplete diagnosis' I feel like if I showed it to my boss for example I'd be met with a condescending reply such as 'but you don't actually have Lupus do you?'

I think that's what's frustrating is that when I've scoured the Internet for advice i find lots of Lupus information but nothing about UCTD , yet if you type UCTD into google it's linked to Lupus straight away ! 🤔

Statistically do a lot of people that are initially diagnosed with UCTD go on to become diagnosed with Lupus?

I'm sorry that it took so long for you to receive a correct diagnosis and treatment , to have to wait from being a child til just 5 years ago is shocking !! I should consider myself lucky really as I guess at least I have a starting point , be it wrong or right , I have been given the hydroxychloroquine which if I do have Lupus lurking in the background undiscovered then I'm at least on the right meds no?

It's interesting that you say ther are sero-negative patients that have Lupus too.

My rheumatologist said I have a strong positive ANA and that means that my immune system is wonky - does that mean that my negative DSDNA could turn positive in years to come?

I'm surprised that the DS-Dna test was the only thing standing between my 'definitely lupus' diagnosis vs UCTD .

Anyway I'm rambling now .

Thank you once more for all your wonderful advice xxxx

[EOLHPC in reply to Cherrywerry]

I'm glad something in there has been useful! Am a bit distracted tonight, so will sleep on this & try to return to you tomorrow...by then you may well have more replies with answers 😉...there are patients here who have experience of UCTD & MCTD etc moving in the direction of a lupus or sogrens etc diagnosis...you're in a process during which diagnosis is refined via a sort of trial and error involving trying treatments while doing a lot of monitoring

in my humble opinion, these diagnoses basically all refer to a group of immune dysfunction disorders which researchers have only begun to figure out and differentiate to the point where diagnostic criteria (clincal examination & immunologic blood tests) REALLY do a convincing job of help on behalf of patients & clinicians.

But I'd think that your current provisional/incomplete diagnosis is good enough to carry significant weight for the time being: you may need to do something to attract the interest of skilled/.experienced forum members, & to message paul & maybe talk to citizens advice...please think about starting a new thread here with a header saying something like:

recent UCTD provisional diagnosis: how to explain to my employer?

Then copy in the body copy you've posted above...a bit repetitive, but if this attracts experienced folk here, this could be good

Courage, cherry: you're going to find your way through this

🍀😘🍀😘

[Paul_Howard Partner LUPUS UK in reply to Cherrywerry]

Hi Cherrywerry ,

I have some information about UCTD from a book called 'The Lupus Encyclopedia'. If you email me at [e-mail] I would be happy to send you scanned copies of the pages.

As for having negative dsDNA;

"Antibodies directed towards this DNA structure appear in 40% to 80% of people who have SLE (depending on the laboratory method and the patient population studied)."

I'm surprised that a negative dsDNA result has been given as a basis for not diagnosing lupus. Do you know whether you met at least 4 of 11 clinical manifestations to satisfy a diagnosis?

[LuckyJC]

You are definitely not alone, I feel pretty much the same as you - lost, isolated and bewildered about the 'diagnosis' I've received. All I know so far is that I have an autoimmune disease and my rheumatologist says its in 'the lupus/sjogrens family' - but she implied that until my DNA antibodies are positive she won't diagnose me with lupus (which I'm pretty convinced I have). Sure others can advise better than me but I think from a disability/workplace point of view anything that affects your health can be a disability depending on its impact on you, and your workplace need reminding of their legal responsibilities! Having said that, given they're being so spectacularly unpleasant about it I wonder if you might be better leaving entirely because of the psychological impact of their behaviour - not that that wouldn't bring other challenges of course as how many of us can afford to leave their job! Xx

[Cherrywerry in reply to LuckyJC]

Thank you for your reply

I'm not glad that there are other people like me but it's reassuring to hear that I'm not alone

I say alone , I have the most amazing partner I could ever wish for but it is hard when you can't physically talk to another person that experiences the world in the same wonky way that you do .

May I ask what diagnosis you were given and for how long you have had your symptoms for/ what type? (Only if u feel comfortable of course 😀)

Was 'lupus / sjogrens family ' your diagnosis? Or did u get the elusive undifferentiated connective tissue disease?

Sorry so many questions lol !

Xxxx

[LuckyJC in reply to Cherrywerry]

Definitely - in my experience no matter how supportive your family or friends, they can't understand it unless they've experienced it. When I think back to when I was 'healthy' I would have had absolutely no idea what it's like to live with chronic pain and symptoms. I don't mind you asking about my symptoms at all - think it's important that we do all share this stuff if we can. I became ill in January 2015 with a bad virus, which turned into multiple chest infections/bronchitis/suspected pneumonia throughout last summer. My symptoms at this point were the chest infections plus a terrible chronic cough that wouldn't go away even in between infections. The doctors were mystified, I eventually had an endoscopy and was diagnosed with a rare allergic condition called Eosinophilic oesophagitis. I started treatment for that last August. Then more chest infections, then I started having episodes of joint pain along with the feelings of general 'illness', which happened every few weeks for a day or so. These episodes got worse and worse and I developed a range of odd symptoms within about two months - overwhelming fatigue, constant joint pain, dry and itchy eyes, chronic nasal congestion, nose ulcers, itchy skin, skin rashes, flu-like woozyness, severe headaches, splinter haemorrhages in nails and most recently numbness in my feet and hands. At this point I never have a day when I feel completely well - pretty much every day I want to stay in bed or on the sofa as I'm so shattered. I am still working though. My blood tests showed mildly positive ANA and p-anca, but the rest are negative. The latest from my rheumatologist is that because my blood tests are normal she can't give me a specific diagnosis other than along the lines of 'it feels like its in the lupus/sjogrens' family, so I've now emailed her and asked what the next step is in getting a diagnosis given my bloods are normal - from what I've read elsewhere on this forum it seems it may just be a matter of waiting for the blood tests to turn positive ie the blood to catch up with the symptoms! I started on hydroxychloroquine last week but had a terrible reaction so hoping to restart that this week and hope I tolerate it better!

[Cherrywerry in reply to LuckyJC]

Hi

Thanks for sharing , hearing your experience is really helpful . So your in a really similar boat to me the 'half and half' diagnosis. Different symptoms but stuck on bloodwork side of things . I'm surprised that the DS-Dna test can 'turn' positive as I would have thought that a DNA test is ether positive or negative full stop , not that our DNA can change.

Are your employers understanding ?

I bet I'm not the only person to come across unhelpful bosses or collegues either,I might start a thread in relation to that solely . 'Insensitive bosses and how you fought back!' Lol

I really hope that the hydroxychloroquine works for you this time . I'm actually off work right now because it's made me so poorly , sick, diarrhoea and really really weak and tired have you felt that with it at all? I can't cope working on a bowel ward with my stomach like this , lol , can u imagine!!

I'm determined to ride it out as I'm so desperate to start feeling human again . In the past I would have given up on the meds so I wouldn't be ill for work but as of today I've decided to put my own health first instead .

Let me know how you get with the hydroxy's if u get chance please

Xxx

[whisperit]

Me too! I have been undergoing investigation since last August, and my diagnosis has been changing almost continuously.

First, heart failure, then Undifferentiated Connective Tissue Auto-immune Disorder/?Sjogren's, and the latest - Overlap Syndrome.

Like you, I am an NHS employee, seeing many new patients (children) every day, and I've now been off work long enough that I'm about to go onto half-pay. Unfortunately, there's been little improvement in my condition (in fact, it continues to deteriorate). In any case, I will have to have a serious think about how I might return, if I do.

On the plus side, I have had good support from my colleagues and line manager. Partly this is because my condition is so visible. When I was at work, I had really obvious Raynaud's, so people were always saying - "Ohmygod, look at your hands!" Likewise, I developed marked interstitial lung disease, so even walking to the canteen, I was puffing and wheezing.

Maybe that's what it takes - cultivate some -scary-looking symptoms so people can see how ill you are!!!!!!

Good luck in any case - and be assured, you are NOT alone on this journey.

x

EDIT - I should add that one of the most frustrating things at first was experiencing overwhelming exhaustion for hours on end. And this was both the most unpleasant and debilitating symptoms, but also one that other people could not *see* at all.

[Hidden]

Hi I have uctd ,I have been diagnosed about 5 yrs now but have been unwell with it for many yrs before that. I too take hydroxychloriquine and had unpleasant side effects to begin with but I stuck with it and it's made a huge difference to me. I still have days where I get flare ups and feel very unwell ,as you say totally exhausted too ,no amount of sleep makes it any better. When I'm at work I struggle through the day and go straight to bed when I get home.I work in a special school and luckily they are very understanding. Like you I have a low white cell count and pick up everything that's going ! I take vitamin d permanently on advice of gp and get antibiotics for colds etc . My rheumatologist told me to join a gym as it would change my life..hard to believe when I could hardly move some days due to the pain in my thigh muscles ! But I did it and it really has made a big difference.I go up to 4 times a week now when I'm not in a flare up.so it's worth trying as its mood enhancing.I try to eat well too and of course the medical red wine helps if I can help at all leave a message x

[misty14]

Hi cherry werry

So sorry to read of your horrid health and work problems. You are certainly not alone in having a diagnosis of UCTD , I'm one and there are lots of us on this forum who are too. It is definitely not an incomplete diagnosis because it means that your body can't make up its mind which connective tissue disease to be so it produces symptoms of three different illnesses!. Scleroderma, RA and Lupus. No wonder we can feel so ill with all that going on. It also means that you must be kept a good eye on as over time it is possible for the illness to change into one definitive CTD. On the other hand you could be like me and stay with this diagnosis forever or at least for a very long time. I've been this for 29 years and only recently learn't that UCTD is a better diagnosis than I thought. I felt it like you do!. The treatment for this and the other illnesses is the same so your not missing out there either!. I do hope the Hydroxy starts to work soon and help you. It's awful you get such serious infections. Cranberry juice is good to prevent UTI's and also helps lessen one when you have it.

As to your workplace problems , kind of ironic not to have understanding from a hospital employer. I don't have experience of this myself but I do just want to say I'm glad you've involved your Union and if you need further help contact Citizens Advice. They have employment advisors who can help. Also there website is good with helpful info and links.

I hope this is helpful , keep posting as I'm sure you'll feel better knowing your not alone. Good luck. X

[PMRpro]

Whether it adds to the discussion I don't know - but one question you asked I can answer: I have a friend who has only a diagnosis of UCTD because it is there, identified and recognised as a disease and originally medically treated by a top rheumatology prof. It's just it doesn't match the criteria for any already existing label. They tried all sorts of things and they did no good, ending up with her being on pred I think. She felt the side effects were as bad as the disease and elected to stop taking anything. She's lucky, she works with her husband in his opticians so doesn't have the workplace problem and just gets on with it as best she can - she knows she won't get the sack or disciplined.

On that side: My husband used to be a head of department in the NHS, at consultant level. He retired early because he couldn't face how things were going. Both our daughters are in the field, both have had similar sickness in the workplace problems. The nurse ditched it last year - as it happened, she then jumped from the frying pan into the fire (social care) which she has now left (before she is beaten up or even killed) and is now unemployed. She is considering going back to nursing although it would be an expensive option and she isn't convinced about the future of the NHS so "Is it worth it?" There will have to be hospital care of some sort so my answer is yes - but that is something different. The paramedic also has had horrendous management over her severe asthma - and to boot hasn't been able to get leave with her husband despite it being policy as they both work in the service. She's spending a lot of money on gaining qualifications to be able to get into training and away from that situation.

In both cases it is a case of "if your face fits" - and the NHS has obviously turned into a dog eat dog environment if you are unlucky. Top-down management influence maybe? I have come across some thoroughly unpleasant nursing situations. My husband turned back into something far more pleasant once he left, daughter No 1 has conquered some demons even though her workplace was fairly demanding and security was poor - that was the company's failure. No2 loves her work and at present is reasonably well.

ANY autoimmune disorder leads to inordinate fatigue - very often even after a medical treatment has been identified. That isn't going to change soon I imagine. But if you can find an alternative then leaving a very pernicious environment will help a lot I think - stress doesn't do the immune system any good and many patients find it was a stressful situation that was the final trigger for their illness.

I don't have anything like the problems these lovely people here do but I do appreciate the difficulty of trying to cope with a job and sarky colleagues who only see that someone is trying to get out of what they perceive to be their fair share of the job. It isn't nice and long term it doesn't have much future for you - not without good colleagues. The sickening thing is that they should actually be MORE sympathetic than the norm, not less so.

I've said it before and I have no doubt I will say it many more times:

I envisage autoimmune illness as a shop counter with many shelves behind it. You stand in the queue and the assistant throws an lucky bag of symptoms at you off the shelf. For a lot of people in the past it was a fairly recognisable selection and at some point a doctor looked at it and wrote a paper and gave it his name - fame at any price! Others who resemble them got the same label. But in recent years it has become far more complicated - they have discovered all these things they can measure - and suddenly what was a fairly simple process of dishing out labels has become far more complex.

They are trying to play mix and match - and there are new versions arriving all the time as they discover another criterion. So UCTD and "overlap" syndromes come into the language. The specialist specialist knows about them - but the common-or-garden one or the GP is totally befuddled. And each of those original labels has a load of sub-groups.

I have an apparently very simple vasculitic rheumatism - but even for that, it is slowly becoming clear there isn't just one version. There are at least 3 different manifestations, one short-lived, one that lasts maybe 5 years or so and one that goes on far far longer. The trouble is, most rheumies see it as a one-size-fits all and try to deal with it like that. Many patients know instinctively that doesn't work - but we aren't "experts". There are a few enlightened doctors - but not enough to go around. So for many it isn't just their colleagues/family/friends who tell them to just get on with it - it is their doctors too.

A long ramble - I hope it helps you put it a bit into context. If not tell me to buzz off - and I'll delete it as "not needed on the voyage".