I think I should just swallow this UCTd diagnosis. I’m getting mixed messages from different doctors, 1 says mri was fine, other says not!!

[Lisalou19]

So UCTd it is. Maybe one day I will get the real answer who knows. I’m so tired of reading mixed messages. I’m tired one report of your hospital appointment says, nasal sores, nasal crusty, skin rashes visible and the next no visible signs. It kind of feels like I’m still in the battle of is it real? Is it not?

Letter received last week, mri fine. Letter received this week mri show oedema, tendinitis and all different legs parts mentioned. What will be done about this?

Skin biopsy are not giving away the answer although there’s a mention of red cells leaking into epidermis!

All I know is I am feeling worse as time passes. I need to accept this and try and manage a better life with skin that is constantly so dry and burning to the point I cry, all these extra bits of dryness and pain, the constant nose sores, I guess I just need to accept them all and hopefully sometime soon I will manage a better quality of life.

My main worry, is that I have either nerve or muscle damage which maybe left untreated, but I guess I will jump that hurdle when the time comes.

[KayHimm]

Maybe it isn’t a question of « swallow » the UCTD diagnosis as much as educating yourself about it. Just like all autoimmune diseases, the treatment is targeted towards the symptoms, not the name. There are people here who have debilitating symptoms of myositis or lung issues with UCTD and are treated according. It just means you do not neatly fit into a classifiable systemic connective tissue disease. Go to HSS UCTD on the internet for validation that you have a real disease and will be treated appropriately. No one is dismissing your real life struggles! Hoping you start to feel better.

[Lisalou19 in reply to KayHimm]

Thank you. I will have a good read up. I’m back at the hospital tomorrow, hopefully start new medication as I’ve not got on to well with hydroQ. Although being off it I can feel how much it was actually working , but it made my eyes so sore and I developed a new rash. X

[panda2]

Dear Lisalou,

Yes, I agree fully with Kay. UCTD is absolutely a disease and it's better it's not put under a label that doesn't totally fit what is wrong with you, because you could have more than one thing going on. You might need treating separately for each thing. I also have UCTD and the important thing is the medication. It is usually the same as if you had Lupus or many other autoimmune conditions. What's fortunate about it is that because it's likely not in your organs, they can get you on the meds more gently, which is easier on the body. Usually Hydroxychloroquine first, then likely some kind of immunosuppressant. You are on these?

For me, because I still kept getting rashes despite treatment, my Dermatologist treated me for Mast Cell Activation disorder. So I'm on 2 medications for that too, but no final decision has been made on this a year later. Though I can report happily that the rashes are considerably less. Then I got an Urticarial Vasculitis diagnosis only a couple months ago after nearly a year after a biopsy which was due to the result having to be discussed on a panel. It just really shows how under researched our conditions actually are.

I do understand those worries that nerve or muscle damage could be happening. I had the very same ones. But do just cling to the fact that the medication would be exactly the same. I've definitely got nerve issues and I have had months of twitching, which is now (touch wood) settling somewhat, I presume, because of the meds. Hang on in there girl. It's a long, long road. And you've got plenty of company as many of us have that same diagnosis.

Panda x

[Lisalou19 in reply to panda2]

Thank you Panda2.

I didn’t get on with hydroQ, so am waiting for new treatment. I’ve had 4 poor days in a row, so I’m starting to feel deflated and fed up. I am back at the hospital Tomorrow so hopefully get new medication.

Whatever is going on has just progressed since last January, so I just feel 🤢 with worry. I’m hoping to see the rheumatologist before my next scheduled appointment in July.

Like you say the medication is what’s important, and I respond really well to steroids although they won’t give them to me anymore 🙁. Apparently the long lasting damage is too high. I just want to feel normal x

[panda2 in reply to Lisalou19]

Ah, I see.. so that Hydroxy didn't take for you in the end. There are others here who've also had real trouble with it. It's understandable why that would be one more reason to feel frustrated. Excellent that you'll be seeing someone about a different med today(?). Good! And if the steroids didn't cause the leg issues as you know in yourself to be the case, then by going off them for these months, you will be able to prove this systematically. My Rheumatologist did say to me that it is a systematic process, where they have to eliminate causes and effects through different treatments. This obviously takes a lot of time since we have to deal with going on meds and off them and side effects get in the way too. Then there are new symptoms, etc. And we're the ones having to live through it all. It is, of course, utterly unfair that others have to be in charge of us in this with and with differing opinions at that. But here we are all here, just like you. All of us in our various boats of unwellness just trying to get on. Keep speaking up as you are. Something will shift to a new place within you with regards to all of this hopefully really soon.

Misty brings up an important point about quality of life and her experience with steroids, which could stand as hope for the future, in case there are further difficulties ahead. Each immunosuppressant has its own set of side-effects that react differently to each person. Be sure to get a back-up plan from whoever is prescribing in case some are too unbearable. I couldn't take one version of Mycophenolate Mofetil, but I sure did see results from it, so they offered a different version and gave me half dose tablets as well as regular dose ones to make it easier on the body. My body did adjust over 5 -6 weeks on a consistent dose.

And with Buckley123 having a similar experience to your oedema, perhaps you can take a little comfort that some things don't just go rogue just because they've appeared. But it's a pretty awful place when your body takes off on you without you. We all totally understand.

Panda x

[Buckley123 in reply to panda2]

I have months of twitching also what calmed yours? It’s like a party under the skin all over every day x

[panda2 in reply to Buckley123]

Hi Buckley123,

Well, I *think* it's calmed. Perhaps it's only for a time. I have had periods when it's hardly noticeable and then it flares up again, so I can't be sure just yet. But this is the longest period, of about 5 weeks or so, that there's only been a couple to 10 twitches a day rather than that all over the body party you mention. God, it's weird, isn't it? I took some videos for my Rheumy, who said it's caused by this disease and that she'd ask the neurologist, but he never got back about it, presumably because they don't think it's important enough. I might guess it is the Cellcept (mycophoenolate) that has been helping? But that is a guess. At least it doesn't hurt. : )

P x

[Buckley123 in reply to panda2]

Thanks p glad to find someone with the same because google is not my friend I even get them in my tongue 🤦🏼‍♀️ I’m glad it’s calmed I guess mine has too but goes more at night xx

[KayHimm]

As Panda says, your nerve issues will be treated regardless of your diagnosis. I have autonomic dysfunction and it is absolutely irrelevant that it is rare in UCTD. Good doctors have to follow the patient, not the textbook. Try to have faith that you will be cared for the best way possible according to symptoms. Hang in there and know you are not alone. We with UCTD represent a quarter of a rheumatologist’s practice.

[Lisalou19 in reply to KayHimm]

This most recent letter is blaming steroid usage for my weakness. The weakness started before I took them which is why I pushed through all the barriers to get medical help. I’ve not been on steroids since January. I guess I’m no doctor but I would rather my symptoms were addressed rather than keep blaming other things. Maybe I’m so down at the minute I’m just not seeing any positives. X

[KayHimm in reply to Lisalou19]

I can hear how discouraged you are. You will have to discuss this steroid weakness issue with your doctors. They do hate steroids, but you may have to make a quality of life argument. Maybe they hope to find something less toxic that will help you. I don’t blame you for feeling down.

[Lisalou19 in reply to KayHimm]

Sleeping better would help. I’m just feeling confused . Rheumatologist letter said my mri was fine, then this letter says all sorts going on in my legs, which would explain a lot of the pain and weakness I get in them. Sometimes it feels like you have these tests and no one wants to follow them up . Will see what they say tomorrow xx

[Buckley123 in reply to Lisalou19]

Don’t worry mate I’ve had bone marrow oedema in my hips for about six years and they have never done anything. And I don’t think it has got any worse but I still don’t know why it’s there x

Uctd is a diagnosis but I do understand completely what you mean.

I don’t think I’ve ever met a doctor with the same view as the next.

The main Thing is that you have access to the treatment you will need as and when.

Don’t give up.

I’m here for you if you want to chat rant or scream xx

[Lisalou19 in reply to Buckley123]

Thank you lovely.

Do you know what I honestly think the problem is?

Because I’ve had the mental card thrown at me, I’m chasing a firm diagnosis to prove to myself I am not a mental case!!!! I need to let that go so bad because it’s holding me back accepting UCTd x

[Buckley123 in reply to Lisalou19]

Yes I know what you mean but do let it go it is a diagnosis x

I have actually been in a emergency assessment clinic after the birth of my daughter 10 years ago for pnd

It followed me for as long as I let it.

My mum was a manic depressant too.

As you know mines benign blamed atm on health anxiety but you have to keep pushing forward cx

[KayHimm in reply to Lisalou19]

You know, Lisa, that may be the case. From what I hear, none of your current doctors are attributing your symptoms to anything but autoimmune disease. You will continue to be treated, tested, re-tested as any person with systemic autoimmune disease. You have been scarred by your long, difficult diagnosis and the referral to counseling. The more you understand and believe in your own illness, the better off you will be. XK

[misty14]

Hi Lisalu

I've been reading your thread and am so glad your seeing your Rheumy as your MRI results letters need querying because no wonder your confused about mixed messages !. It's so bad to receive different results!. You wonder if they've got the right patient!. I'm UCTD too and you've had excellent replies from Kay and panda that I can't add any more too. Shame you can't tolerate Hydroxy , I've just started it but glad your going to be put on something else. Let us know how you get on. It's true steroids can cause muscle weakness but you can as you know get same symptom which needs treating to prevent further damage do i understand your concern. I've been in steroids for 30 years at different doses and with right care the side effects can be managed!. It's important that the inflammation is treated sufficiently as Kay and panda have said. Do let us know how it goes. X

[Lisalou19 in reply to misty14]

When I got the letter last week that said my leg mri was fine I just thought my goodness what on Earth causes all this discomfort? Then I just thought oh well must be another in my head symptom 🙄

Then this new letter comes and I’m just like wow ok, they have mentioned muscles around my hip area where I get a lot of pain. Even changed my mattress because it was that bad. There surely has to be an explanation on why my legs are suffering!

Steroids were really my saving grace, I miss them because I miss me 😔 x

[misty14 in reply to Lisalou19]

Hi Lisalu

I hope you got a change of treatment today. You've proved like panda has said that you had the leg muscle problem way before the steroids and that they helped it as you've been on them since Jan!. Muscke inflammation needs pronto treatment to stop further damage as you know so you do need to clarify with your doctors which set of MRI results apply to you!. If today hasn't been helpful then could you write or email your Rheumy to get his clarification!. It will help you as no wonder your very confused and poorly. X

[KayHimm in reply to Lisalou19]

You are conflating a negative result with « psychosomatic. » MRIs detect certain things and not others. You have to know what they looking for. Nerve stuff may never show up on a scan. Maybe ask the question, « What do you think may be causing this particular pain? What did the MRI tell you or rule out? » Be prepared to get answer like, « Hard to know. « 😅 That does not mean « psychosomatic. » I just ask. « Hey, am I crazy or is something going on here? » 😅 I guarantee you your doctor will assure you that it is not « in your head » but that they don’t have the tools to document the issue.

[Lisalou19 in reply to KayHimm]

Thank you

I am going to ask questions tomorrow and see how I fair. I can already feel

My anxiety but I’m going to keep it together and March in there like the strong women I can be 😉.

I still don’t understand how 2 letters can be so different, and worryingly how many times have I had to reply on the words of a medic that are potentially untrue!!! To be honest I was confused how my mri was so normal of my legs , considering the grief I get with them but if I didn’t received this other letter I would have plodded along none the wiser.

I have shared care, seems like one cares more than the other 🤨x

[KayHimm in reply to Lisalou19]

Totally appropriate to ask about conflicting results. I suspect you will get a reasonable answer. He may explain from different view points. It is okay to tell the doctor you are frustrated, confused or whatever. It is their job to help. Can you post the letters?

[Lisalou19 in reply to KayHimm]

I’ve got copies on my phone to take with me. X

[Lupiknits]

I agree with others that it seems, on the whole, that the label doesn’t matter because much of the treatment is the same. I’m really sorry the hydroxy didn’t suit you.

I can understand the frustration of consultants on their high horses and disagreeing with each other, or just not helping.

I think of you every day . Rant away x

[Lisalou19 in reply to Lupiknits]

Thank you. My skin biopsy has come back as non specific 🙄. Seems everything I have is not heard of or there’s no diagnostic tool available for it yet! One of the areas shows blood that leaks into my skin, l mean what on Earth causes that!!!!!

I just find it all weird and it takes me back to what I believe I’ve always suffered with “auto immune progesterone dermatitis”. Very rare and the only person who has created a blood test to detect it is in America. Might mention it again tomorrow, see if I get a positive response with the information given to a new doctor 😬x

[Lupiknits in reply to Lisalou19]

Do they give a name to the blood leaking into skin thingy?

[Lisalou19 in reply to Lupiknits]

Red cell extravasion sub epidermal fibrin and marked oedema but no vasculitis

Ps. I didn’t remember that, I had to keep going back to the letter 😂x

[Lupiknits in reply to Lisalou19]

Oh hmmm *rushes to google* . Sometimes my O Level Latin from the Dark Ages helps me translate, but doesn’t mean I understand!

Sounds very rare but that’s no consolation x

[Lisalou19 in reply to Lupiknits]

This is why I get so frustrated, why does everything about me need to be rare!!! I don’t think it helps my family understand what’s going on either .

X

[panda2 in reply to Lisalou19]

Vasculitis causes blood leaking into the skin. I have this. Diagnosis took two years(!) and one inconclusive biopsy, just like you, before the one that gave the Urticarial Vasculitis diagnosis. This is contained in the skin. It can cause burning feelings that you mention and the scaly bits. I had a new symptom a couple months ago where I got a spray of circular bruises under my upper arm for absolutely no reason, but no scaly bits, so it is all various. My Rheumy said that was Vasculitis too. The immunosuppressants (possibly plus antihistamines) will be the treatment for this as well as the same immunosuppressants for the UCTD likely. For skin level vasculitis there is a 90% success rate I've read from John's Hopkin's website. That has allowed me to get a grip. : )

Hang on, you're getting there.

Panda x

[Lisalou19 in reply to panda2]

I had 2 doctors suspect a form of vasculitis since last year. But my bloods say Nooooo!

My face burns extremely bad when I’m unwell, and if I rub my skin or scratch it when I’m poorly I get let with blood marks on the top of my skin, like what happens with a love bite! Not had one of those in years btw 😂😂x

[panda2]

Ah.. I missed your reply about 'no vasculitis'. Must have been typing. Just straight up ask the Rheumy or whomever you see next what exactly that means. Try to remember that 'rare' doesn't mean you're untreatable; and a rare aspect might just be a way you manifest the disease/s, not that you're outside the box of what they can deal with. I suspect all of us have been told we're in rare and very rare categories. It's just your version of things in this connective tissue disease world and a real lack of statistics out there. Just think, we're leading the way in research for those to come! I find comfort in that.

And you've definitely got a REAL diagnosis that they are trying to treat. It's not in your head. It's NOT in your head. : )

Panda x

[Lisalou19 in reply to panda2]

Thank you.

This site has been my best therapy so far. Your all so kind, and lift me up to fight on another day.

And yes regarding research for the future I’m happy with that as I have 3 children who potentially could fall into this bracket.

Strangely through my struggles I believe I have become more of an empathetic individual. I am more aware of others pain without visual symptoms and also towards my own children. X

[KayHimm in reply to panda2]

Absolutely! Good doctors have to be prepared for « rare » manifestations of any illness. And we systemic autoimmune patients challenge even the best doctors. But I read we are considered « exotic » 😅 Not much consolation but I guess we are interesting!

[Lisalou19 in reply to KayHimm]

That sounds nice exotic.

My fav is coconut and pineapple , so I fit perfectly x

[Buckley123]

What’s al xx

[Joy_1]

Stay positive Lisalou. It may sound mad that I am saying this, but I too have UCTD. I also have lung involvement with mine and of course that really frightened me initially. But I pushed on through, asked a tonne of questions, did not leave the room till I got the answers and I importantly too understood what was going on and did a tonne of stuff to help myself and 6 ish years on I am heading (hopefully) into remission. I have minimal lung damage and by hitting the pool 3 times a week I brought my lung function back to normal and there has been no progression in my lung damage since the day I was diagnosed.

So push at the system, be firm with yourself and keep your glass half full. There's hope for us all.

Joy

[KayHimm in reply to Joy_1]

Great advise, Joy! 😀

[Lisalou19 in reply to Joy_1]

Thank you Joy.

How was your lung involvement detected?

I get breathless but only when I feel poorly . I want to get Into swimming but I’m lacking so much confidence in myself. Abit more meditation, I might just get there 😊x

[Joy_1 in reply to Lisalou19]

I developed a persistent dry cough. To cut a long story short. It was picked up in a chest x-ray and then I had a CT scan.

I was lucky I know as my rheumatology consultant was head of dept (now retired) and he had spent the first part of his career working in the chest clinic. Breathlessness never came into it for me initially. Just this persistent dry cough that went on for 6 weeks and then suddenly one day it stopped. And then a couple of weeks later I suddenly could not get out of bed one morning. All my joints were stiff and v painful.

Sounds like you are on to a winner with your meditation.

It was very black and white for me, the need to get into the pool and swim. After my initial Rheumatology appt I was then also put under the chest clinic and thankfully once again I was seen by the head of that department. I told her I would take all my medication etc etc, but what else could I do to help myself. She told me to get in the water and swim and swim and swim.

When I first got into a pool I could only manage 2 lengths, I was shocked at how unwell I was. I persisted, each time adding a bit more to the distance I covered in the pool. By week 14 I was swimming 65 lengths. And my chest consultant told me my lung function had returned to normal. It was fab as she said she had never seen anyone achieve this. Thankfully she said I could now cut back (got rather boring going up and down that pool so many times) so I go to aqua 3 times a week and also swim a few lengths after the class.

[Lisalou19 in reply to Joy_1]

Way to go you 😊

I need to get my swim 🏊‍♀️ on xx

[panda2]

Yes! Yes!

x

[Buckley123]

I see thank you I have hyper mobility never been told it’s autoimmune xx

[Buckley123]

Thanks I’m not sure weather it is or isn’t seems to come along with the rest xx