The Vanishing Diagnosis - UCTD?: Not sure what the... - LUPUS UK


29,171 members25,602 posts

The Vanishing Diagnosis - UCTD?

RxMe profile image

Not sure what the diagnosis is. Haven't felt "good" in years, and finally got a PCP who listened to me. After hearing about all my issues (dry eyes/dry mouth, stiffness, general malaise, muscle pain, tendonitis/bursitis, joint pain, hx of palpitations, mitral valve prolapse, LER, previous diagnosis of APS, etc.), she ran some blood tests and it came back with a positive ANA of 1:320 (speckled) and a positive anti-RNP of 1.4. Suspected MCTD, so she sent me to the rheumatologist. Rheumy thought I might have UCTD, not MCTD. That lab work came back all negative! Rheumy could not detect the mitral valve prolapse, although 2 previous docs had done so. Although I had suffered 3 miscarriages and the fertility doc at the time had diagnosed me with APS, it no longer seemed to show up in the blood testing. Echocardiogram and PFT both normal.

PCP had thought it might be worth trying Duloxetine (Cymbalta) to treat what she

thought might be fibromyalgia (although I did not have all the tender points required for the diagnosis), but that was ineffective, and only added to my insomnia! (Strangely, perhaps it rejiggered something, because within two days of stopping, I have been sleeping like a baby for the first time in years!!!!!)

Rheumy unwilling to say I do or do not have a connective tissue disease, but wants to monitor me. In the meantime, still dealing with the original problems I went to the PCP for!

All I know is, I want to feel better, get rid of all the achiness. I try to keep very active, don't overdo, but kind of feels like running in place. Very frustrating. I would welcome any thoughts...thanks for letting me vent!

17 Replies

You'll get there with a diagnosis, we've all been there ,I have had all thouse issues but with a hourendous rhumatolgist who regularly made me cry the real me dissapeared 5/6 years ago , now with the right help and equipment I am able to a certain level and because I rest as much as I can , mentally I feel a lot like the old me , today I can bearly keep my eyes open and am in pain , it's stressful which is bad for us where you are now ,but eventually you'll get there and then hopefully you'll get the help you need !

RxMe profile image
RxMe in reply to Shadows-walker

Hi, Shadows-walker!

You have REALLY been through the wringer, and without the support of an empathic Rheumy! (Not that mine is particularly warm & fuzzy! ---but she hasn't made me cry [yet!])

My third and last child just flew the coop for college in September and hubby had a radical nephrectomy for cancer last Spring. Two months ago he had a stroke and is staring down the barrel of yet another surgery. I feel like I better roll with the punches!

Hearing about the severity of others' illnesses helps put things in perspective for, I am not in the pink of health, but nor am I at Death's Door, so gotta suck it up & get through each day.

It's important that we don't vanish along with our diagnoses (or lack thereof!). It sounds like you are trying very hard to recapture YOU, something that becomes increasingly difficult as our interior landscape darkens when physical infirmities take hold,

In general it's very hard for women to allow themselves the luxury of being taken care of or even being heard. We are so used to the caretaker role. How do we get our own needs met when we are too tired or too sick to make demands? It sure ain't easy.

I hope you continue to allow the real you to find a way, even if that means getting a new doctor or reaching out to others for a cyber-hug! :-)

Thanks for listening.

Shadows-walker profile image
Shadows-walker in reply to RxMe

Hi just been watching month Dom in China and Japan. And being mindfulness is wonderful taking yourself out and being at piece , I have done pain and fatigue clinics , and have resently been in a mind course " stress and anxiety " and how to be in control . I am booked in for "a self worth course " and am looking forward to that , I should of been on a brain training course but was not well enough that day. I can recommend mind courses , you don't have to have a serious mental health problems to use there help they help with coming to terms with other health issues I forwarded barncoulds piece Molly's fund to one of the local support workers so they could also understand what we the lupus ,sjorgrens MCTD ,UCTD are going through he found it extremely helpful,, he goes for a walk with once a fourtnight with me with my dogs we call, it our mindful walk it helps him as well as myself , I hope you and your husband find the help you need to rise to the fight to which you both have to deal with in a stress free as possible way !

Gentle hugs. And please remember you have to be kind to you first before you can be kind to others

Chris xx

RxMe profile image
RxMe in reply to Shadows-walker

Thank you, Chris! Those sound like great ways to lessen all the stress and whatnot. I will look into it and see what may be offered in my area. I have thought about treating myself to a good massage--if only my healthcare would cover it!

And dogs are such wonderful friends in need. I think a dog might be just the prescription I am looking for! Even for hubby who is cat person. (Just not crazy about the doggie poop aspect...had enough with all the baby diapers!)

Shadows-walker profile image
Shadows-walker in reply to RxMe

I use long handle old beach spades left over from the children , for the poop 💩 on the patio with the dogs and jeys fluid rinse down , you get nappy sacks over the poop bag and the smell is camouflaged somewhat and just remember the bigger the dog the bigger the poop ! 💩 I recently got two baby tortoises as well so knowing and inquisitive and gentle , I am learning about weeds , pesticides, what they can and can't eat , I am having my garden all re done with raised beds and am planing a tortoise friendly feeding garden so I can dry flowers and weeds and feed them all the year round just from my garden I am so excited it's given me others to care about . Raised beds from reclaimed sleepers are only £10.00 ea and they will cut them to size and deliver them for free as they are disabled friendly small family local firm, I was going to use breeze blocks or cinder blocks, as some call them , there are 100s of tortoises out there that need new homes like dogs and are actually free , you just have to make the appropriate habitats in your garden and not feed them cat food , if any one is interested the tortoise protection group on FB will teach you how to care for them in advance , there loads neededing re homing in London , baby's you obviously pay for , if anyone has a thought to do this , but it's amazing how much better these amazing creatures have made me feel better in myself , my little dinosaurs 🐢🐢😊 sorry if I have gone off topic a bit , but I feel useful again . 😊 Hugs

Chris xx

RxMe profile image
RxMe in reply to Shadows-walker

The only tortoise in my home is hubby who barely moves off the couch! :-)

Ahhh, now I have a long handled pooper scooper, and it's great, as bending down makes me feel terribly sick as I have 4 hernias and all my guts are spilling out of my front :( xx

Yuk a long handle poop scoop could it manage a Labrador poop ? And if so where do I get one from and are they any good on grass ?

Shadows-walker profile image
Shadows-walker in reply to RxMe

Mind do health treatments like massages and local collages will do treatments at discount prices when teaching students. I am having my eyelashes dyed this week purely because I can't wear mascara any more , I have also started using re gain to re grow my hair that didn't come back after the methotrexate experience, I cannot tolerate that drug or sulphsalazine , and re fuse steroids as they make e feel arwful , hydrochoquinne has been good but unfortunately the rhumie would only let me have 200 mg a day when I had my second opinion he put my meds up 400 mg a day and that has made a big difference, but unfortunately the damage that has been done from a rumatoligist that's a lime desease specialist has been done and cannot be undone , I have tonself catherise , I have bowel issues , my liver is not happy , my lungs a damaged , and then of course eyes, , ears ,taste ,touch and the lack of collagen in my body is just well I basically have nit a lot of muscle elasticity. I should of stood up to this dr a lot sooner but if you see theses Drs with no support and you trust them as I did and you loose your confidence it's hard , but I have had the support of my children this last 2 years with 2 of them taking time out of there lives to come home in turn to suppoert me and get me back on my feet so to speak , and I am finding my way again . I will have a PA in place as have been finally been part funded by social services , so my son can move back down to Brighton, my daughter took her final year off her degree last year , so my son took over when she went back to finish in Birmingham, and he will hopefully go on to teach in September. I have been blessed .


Chris xx

RxMe profile image
RxMe in reply to Shadows-walker

Chris,, I like your suggestion about contacting a local college to get those discount prices! And who knew that eyelashes could be dyed?!! You are full of great ideas. Now I am inspired!

On a side note, when I told my Rheumy about my own lack of muscle elasticity (despite daily stretching, yoga, swimming and walking), she merely sniffed, "Well, lots of people just aren't bendy"--or something to that effect! On rainy days I feel like The Tin Man!

You are so fortunate to have the support of your children. I think it is hard for mine to extend themselves too much emotionally at this time since their dad's two "near-death" experiences this past year.

Shadows-walker profile image
Shadows-walker in reply to RxMe

Oh I am sorry , my youngest two are the best ,my eldest has her own problems and cope with me as well so I do understand sometimes things get to much for them , my son found it hard initially and left it to my youngest daughter but he's so proud of her and wants her as much as me and was as cross as me when she refused to,leave me 2 years ago they made a deal she'd get me back on my feet literally and he'd take over and keep there and sort out help so she could continue her studies she's in in the last 5 weeks now , then it's a PGCE and hopefully a job at the end of it ! Hope your doing ok ,

Gentle hugs

Chris. X

Hi RxMe,

Sorry to hear that you are having so much difficulty getting a confirmed diagnosis. Have you been started on any other treatments like hydroxychloroquine to see if they may help?

If you are unsatisfied with the plan set out by your current rheumatologist, perhaps you could seek a referral to another consultant for a second opinion? Maybe you could get referred to somebody who has a specialist interest in lupus and/or connective tissue diseases?

RxMe profile image
RxMe in reply to Paul_Howard

Hi Paul,

I did mention to the PCP about possibly starting the hydroxychloroquine. She didn't discount it, but neither did she endorse it. Maybe she is hesitant to prescribe it in that the diagnosis is very much up in the air...

And I think I will follow your suggestion about seeking a referral to another consultant. I don't think my Rheumy truly specializes in connective tissue disorders.

Thank you for your help!

Hi RxMe,

I have UCTD with lung involvement. I agree with Paul, you need to see a real specialist in this field as we are a 'small + weird bunch' to put it mildly.

My local hospital failed to diagnose my disease. My GP got very angry and referred me to the nearest teaching hospital. I now see a Rheumatologist who has many years of experience under his belt. The Rheumatology Team have learned to listen to me rather than looking at my blood test results as my inflammatory markers NEVER go beyond the norm.

It's taken around 3 years to get back on track. But MTX has thus far been the drug to return me to the land of the living (I'm about 75% back to norm). I also need to take Pred, but you will find some of us with UCTD do need to take a 'low' dose of Pred.

And as for the lung issue. It was caught before it had done any major damage. And I brought my lung function back to normal with tonnes of swimming and aqua aerobics.

So hang in there and push for a specialist. The quicker you are on the right combination of meds the less permanent damage will be done.


Hi Joy,

It's hard to put one's faith in lab tests when they don't seem to reflect the way one feels! But I suppose it makes things seem "official" enough so the doctors feel validated in writing a prescription/diagnosis.

It sounds like you have a great team of docs now who are willing to see the patient and not just focus on the tests. You are indeed lucky. The cardiologist I went to never examined me, barely shook my hand -- only reviewed my EKG for about 5 minutes.

Maybe I am just a little leery about starting any new meds just yet. The more one reads about the side effects, the less appealing they seem! But I will try to find a real specialist and sort this all out.

You are very kind to give of your time...thank you!

Joy_1 profile image
Joy_1 in reply to RxMe

Happy to be of help RxMe.

Yes you are right about the meds. The first drug they tried only had about 6 side effects and I did not get any of them. But the drug did not work for me. MTX has a long list of side effects but again one might not get any of them. I got a couple of them but making a couple of changes to what I did stopped the side effects.

Anyway I'd rather take the drugs than cause permanent damage to my joints and further damage to my lungs which would otherwise shorten my life drastically. But you need to make peace with yourself about the meds.

Wishing you all the best.


Thanks again, Joy! I am relatively lucky in that (if the tests are right!) no real severe damage has occurred...yet! Good point about possibly risking some side effects rather than having permanent damage to your joints and lungs.

You may also like...