Rheumy Appointment!

[daisydayz]

Wish me luck

Think I may need it!!

[Horsewhisper]

Good luck! Thinking of you and hope it goes well 🤞🤞🤞💐

[daisydayz in reply to Horsewhisper]

Thank you💕

[CecilyParsley]

Good luck. I hope all goes well xx

[daisydayz in reply to CecilyParsley]

Thank you💕

[Tiggywoos]

Good luck !!!!! 🍀 🤞🌹

[daisydayz in reply to Tiggywoos]

Thank you💕

[Hidden]

Best of luck everything’s crossed for you xx

[daisydayz in reply to Hidden]

Thank you💕

[svfarmer]

Good luck 🤞❤️

[daisydayz in reply to svfarmer]

Thank you💕

[daisydayz]

Well I've been discharged again! bloods came back negative again!

apparently have symptoms

suggestive of a connective tissue disease but not conclusive without the blood work.

The decision was made before I went into the consulting room no matter how I felt or what I said it was just 'sorry I am not in a position to make a diagnosis at this time'

I've been seen by him three different times now - each time with a different set of medical students, whom I agreed could be present .

My gut feeling screamed that this would happen.. I now feel abandoned & cast aside.

I walked out with my dignity & said thank you for all your help but I think you might be seeing me again.

I fully understand his reasoning but what about me? where now?

I had a good weep when I got home.

Thank you for listening😘

[Hidden in reply to daisydayz]

So sorry daisydayz you must be feeling so low after that experience.It’s bloody hard work trying to get a diagnosis of any kind and the problem is we know our bodies are crying out for help giving us all these clues but no one sits with us and even tries to put it all together,it’s just makes us feel defeated doesent it.Maybe it’s time for you to ask to be seen by a different reumy who may have a different approach I think I’d go down that route if it was me.Have a lazy pamper day today to lift your spirits and then you’ll have the energy to do battle another day.best of luck xx

[daisydayz in reply to Hidden]

Thanks for your support Diddlydot. This is my 2nd Rheumy referral, but the way things are progressing I can see no 3 emerging in the not to distant future.💕

[Pumpkin2009 in reply to daisydayz]

Trust what you know and feel. you have every right to be sad and upset. When will doctors learn that tests are never the whole picture! So infuriating, but don't give up.Wishing you all the best.

Healing hugs.

[daisydayz in reply to Pumpkin2009]

Thank you so much💕

[KayHimm in reply to daisydayz]

Good question. What about about you? I understand that he may not be able to give you a specific diagnosis at this time. But did he tell you whether your symptoms look like early connective tissue disease?

Many of us were in your same position at one time. But the ways of handling this unclear stage varies greatly. How could not feel abandoned? You sort of have been abandoned. When I was young and with few symptoms I was told I was showing a tendency toward autoimmunity and that I would be watched. I was clueless. But now I know why it is so important to tell the patient how you will proceed until things become clear.

Maybe talk to your GP. He may have either talked to the rheumatologist or have notes from him.

By the way, I had thyroiditis. Your hypothyroidism may be a red flag even though it is not specific.

Stay in touch. I hope they are « watching » you.

K

[daisydayz in reply to KayHimm]

Hello Kay

Many thanks for your reply & advice

Yes I do feel abandoned

After being told I had symptoms that could be suggestive of a connective tissue disease but nothing conclusive ..I knew what was coming.

I was told I could alway be referred again by my GP or dermy if things change, but he said "there were people in greater need than me at the moment"

I can't deny this.. there probably is .. but I am important too.. things have escalated not declined & if I can't get them to take me seriously now, will I ever??🥴

That's how things were left - I was discharged with a recommendation to seek help for my anxiety - told him i had been waiting for months for one!

I still have a dermatologist & am still on hydroxy so that is something.

..but one thing I have learnt is that next time( & I'm pretty sure there will be one) I will not agree to medical students being present as the consultancy was anchored towards them & not towards my own specific needs ..I just feel a little bit used..

I am sure my thyroid was in range? but will check again, thanks for pointing this out🙂

Take care & really appreciate your input

💕💛💕

[KayHimm in reply to daisydayz]

Daisy -

It sounds like your GP is concerned about autoimmune disease and wants you to know the door is open. There is a lot he/she can do. They will repeat CBC, note any joint inflammation, monitor kidney function and organ involvement.

My internist was very involved during the early period (later too). So I would continue to see them and ask if they are repeating rheumatology tests when you are symptomatic. I know they will monitor your thyroid function.

Hang in there and check in soon.

XK

[daisydayz in reply to KayHimm]

Thank youXx

[RosieA]

So sorry for the late reply but have been having computer problems. Hum!! You must be so very disappointed. It is so easy for others to make us feel a fraud at times, even when it is clear that we are suffering. Have you hatched a plan yet to get yourself listened to? Is your GP sympathetic, helpful? How did he explain your photosensitivity? Other symptoms? I felt very sad when I read your post - it is so very hard. I spent many years in agony before they diagnosed endometriosis - it had got so bad that when I finally saw a consultant she found a mass and got her diary out there and then to book my operation!! I was only in my 20s!! Thinking of you and do keep in contact. xx

[daisydayz in reply to RosieA]

Hello Rosie

Thank you for your lovely reply

I think I more or less suspected this outcome, but the disappointment is still very hard to take.

I think he knows I will be back..he said I could still be referred back through GP or dermatology if things change...his words were 'there are others in greater need' & to be honest, I don't think he really wanted my confusing, mixed up, crazy bag of a challenge😖 with no clear indicators pointing in a specific direction.

No further along with the photosensitivity im afraid.. my face only displays a gentle reddish glow in the butterfly area & not a full on scaly rash!!

On a positive I am still under a dermatologist & being treated with hydroxy, so that is something to work with.

How have you been Rosie?

It was horrible to hear of your own struggle with endometriosis. I know how debilitating & agonising this can be.. I had a friend who suffered from it.🥺

I am down but not out yet, just need a little time to gather my thoughts.

Take care Rosie

💕💛💕

[misty14 in reply to daisydayz]

Hi daisydayz, ive just been reading about your Rheumy appt outcome and just want to say im sorry at what has happened. Good for you though going out with your head held high!. Its a traumatic experience one that ive had with a room full of medical students and i left in tears so good on you.

Im sorry you've been discharged as he really should be monitoring you. Keep a note of any symptom changes as you must tell your gp specially being on hydroxy.

I just want to say also diagnosis can take years, it did with me, and several consuktants but i got there and im on all the right treatments now. It changed when i developed new symptoms so you'll get there if you keep fighting. Keep on this forum as we can support you with our own experiences.

TAKE CAREXx

[daisydayz in reply to misty14]

Thank you so much Misty14 for your kind reply & for sharing your own personnel experiences - I found this so very helpful.& yes I agree, this forum is truly supportive, It has given me the strength to keep on fighting even though I just wanted to give up.

Thanks for caring misty & take care yourself.

💕💛💕

[misty14 in reply to daisydayz]

Im so pleased daisy to make a difference for you. Have as happy an Easter as you can. Xx🐣💕🐣

[RosieA]

I've been up and down. I am not sleeping well with a combination of hip pain - bursitis (they think over the phone) and numbness from my shoulders into my thumbs. Makes me feel rotten the next day to add to the other symptoms. I am on a mission tomorrow to speak to a GP - one that I like and know- to try and get some help. Physio- wonderful but doesn't want to see my in the hospital until I've had second jab. Honestly, I'd rather see her as the thought of another couple of months not sleeping is not a happy thought. I have to go to bed with a hot water bottle that does the round from aching ankles or hip. Ruddy hell, feel like I'm falling apart. Meanwhile, letters from consultant now say -diagnosis inflammatory arthritis with features of UCTD but still won't diagnose definitively whilst symptoms develop.My mouth sores are constant and worry me as I don't understand the why and what's. Moan, moan and moan. So sorry.

Like yourself, the not knowing is a debilitating disease in its own right. Without an inquisitive mind, a good dose of research and more than enough resilience I think I would know absolutely nothing about what is going on. The rush is to diagnose but not to explain or say --- this is it... this is what it means.. this is how it might progress.. this is what your daily life might look like... and why..

I suspect that I might have given into the desire to wrap my hands around your consultant's throat when he said there are more in greater need. I have often reflected that I might yet end up doing a stretch at Her Majesty's leisure. I was once told by a consultant to go and have a baby- it would sort me out. In my 20s, in agony.. says it all. Who is to judge the impact of what you are going through. It is a 'get out of jail' card. Of course, there will always be those in greater need but that does not and can not negate your need. He/she should never, ever dismiss you will a dose of guilt - very, very unprofessional and quite frankly adds to the list of all those whom research projects repeatedly cite as having lost faith in their Drs and who then delay getting much needed help in the future. Hope you don't mind the rant but at least he showed some kindness in saying that you may in the future get your GP to re refer you. Indeed, dermatology might end up doing the same. What a journey we are on. xx

[daisydayz in reply to RosieA]

Rant away Rosie, I don't mind at all🙃 very well said👍

Its miserable you are having such a horrible time at the moment with your hips & not sleeping well. Mine are also paining me, as are my thumb joints. I'm being extra cautious, as I had a couple of chronic episodes of hip /pelvic pain last year, one of which took me to A& E🥴 unfortunately unexplained- but Osteoarthritis was mentioned.

🤞🤞you had a more pain-free & restful night last night💛 & good luck with 'mission GP' today I hope you get your appointment & he can help you.

Thank you once again for your words of wisdom Rosie😘

Take care X

💕💛💕

[misty14 in reply to RosieA]

Hi rosieIm very sorry to read how your struggling at the mo rosie and wondered how your gp appt went?. I do hope you have some help from her.

I know how painful hip bursitis is and how difficult not sleeping makes to our lives. Ive had bursitis several times and it can be treated by either a local anaethestic or steroid injection . Ive had both at different times and after several goes it has gone for good!.

If you put your hand on the outside of your hip and work downwards can you put your finger on the painful spot on the outside area?. If you can then its definitely bursitis. Hip joint pain is the groin!.

I also just want to say ive been given a diagnosis of inflammatory arthritis and UCTD which ive had for years now. UCTD is a proper stand alone diagnosis. I do understand how you feel as the consultant said it not very clearly for you . UCTD tendencies i agree isnt a very definitive way to say it. I used to spend years asking my consultant for a more clearcut diagnosis as we badly need it for our suffering dont we?. Since i joined this wonderful forum i learnt what UCTD meant.

What it means for you is that your illness could change over time and so it needs monitoring and you need to stay in Rheumy care .keep noting any new symptoms. Hope the hcq is helping .

As to persistent ulcers, i find they are a sign of a flare when they come in multiple amounts. Ive got some now and they can be painful too.

I was recommended to use Difflam mouthwash. Its expensive but really does help the pain by numbing it. Im using it now.

Hope thats helpful anyway and you feel better soon. Have a happy easter and take care. Xx🐣💕🐣

[RosieA in reply to misty14]

So very sorry for the late reply. I have only just got my new computer!! I spoke to the GP today on the phone and now have a F2F booked for Tuesday. Yippee as she is great. My mouth has three blood blisters at the moment and my thumbs have started going numb at night. Deepest joy but at least she is going to see me and has already talked about getting imaging of my neck, elbows and wrists if need be. I feel such relief. I keep hearing mixed reports about UCTD - is it rare do you know. I also keep hearing that 25% of people going into Rhuemy have this diagnosis but if you then take away the percentage who go into remission and those that go onto a specific CTD then it halves. Your description of its changing nature is good and explains why my joints are less of an issue than at the beginning, now it is definitely mouth ulcers, my heels (dreadful by the end of the day - feels like I'm walking on bones) and photosensitivity rule the roost. Do you ever feel like you've becoming on of the most boring people on the planet, I do as I daily try and ponder about what the hell happened to who I was - a veritable pit pony. xxx

[KayHimm in reply to RosieA]

Rosie -

What Misty says is right. UCTD is considered its own category. Just like lupus or Sjogren’s evolves, UCTD can evolve, usually within the first two years. I think I have read the term “stable UCTD” if, like me, you don’t evolve to lupus, scleroderma or Sjogren’s.

I have never had anti-DNA antibodies or low complement- two things that tend to point to lupus. On the other hand, I am described as lupus-like because of neuro issues, certain antibodies and photosensitivity.

The rheumatologist cannot rest just because your diagnosis is UCTD. There are people here with interstitial lung disease, neuropathies and pericarditis.

Please never feel abandoned!

XK

[RosieA in reply to KayHimm]

Yes, I too have read about stable UCTD. Luckily, my consultant is very diligent. At present they don't want to give a definitive diagnosis as my symptoms keep developing. At present it says inflammatory arthritis with features of UCTD and then the list of symptoms with dates. She is also going to ask for opinion of another consultant with expertise in CTD. I think neuropathy might be something I am beginning to struggle with but I am so pleased to have this face to face with the GP. She is excellent and is going to help join up the dots and order tests that she feels are appropriate to help with the new symptoms like the numbness. Like you I have just had positive ANA and have struggled at times with neutropenia. Thank you for always giving guidance - it really is appreciated. xx

[KayHimm in reply to RosieA]

You’re welcome. I’ve been UCTD for a long, long time and it has taken years to understand. One by-product is you get to understand how the other CTD are diagnosed too. My rheumatologist is very knowledgeable. He answers my questions straightforwardly. He wrote a good article about diagnosing UCTD and what early signs should make the doctor think lupus or scleroderma. No hard and fast rules.

Mitnick, Askanase, undifferentiated connective tissue disease if you want to read it.

XK

[RosieA in reply to KayHimm]

A very good article thank you. The ANA was interesting. My pattern was initially nucleolar, then went homogenous and now -ve. My rheumatologist was good in explaining that as far as blood tests were concerned at this point they were mainly looking at them to ensure that there was no organ involvement to be worried about. I keep finding different information about how common / rare UCTD is. Do you know? x

[KayHimm in reply to RosieA]

Good question. I know my rheumatologist says it is a lot of his practice. Will try to get that answer. I think there are people who are diagnosed as lupus by GPs and then re-diagnosed as UCTD by a rheumatologist. I have no other doctors - none - who use the term. By now I find it amusing. Their job is to worry about how the CTD is affecting the gut, the brain, the skin. UCTD is beyond them, so they make something up. 😅

My rheumatologist says the same thing. Organ involvement is the big thing!

XK