So upset: After 18 months of in an out of hospital... - LUPUS UK

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So upset

BabyOleg profile image

After 18 months of in an out of hospital and for tests and scans etc because they suspected SLE/ some autoimmune problem

Recently went for bloods and on the slip it states :diagnosis: undifferentiated inflammatory condition.

Today I receive a letter from rheumatology to say this....

Dear Jemma

Diagnosis:

1. Joint pains, intermittent eyelid swelling, very dry eyes and intermittent itchy rash over anterior chest, intermittent pyrexia, fatigue, chest symptoms with cough (normal CT chest), hair fall, Raynaud’s phenomenon

2. Previous episode of fixed dilation left pupil with ptosis at the end of May 2021,

Your blood work is normal/negative and there for we have ran all our tests and cannot find a diagnosis.

We will give you an open appointment for a year incase your joints swell again and you want to be seen for this.

We wish you all the best for the future.

.

.

.

What I don’t get is also, The eye hospital told me I have episcleritis, but the rheumatology say The eye hospital told her everything is fine.

I have received an appointment for dermatology in 2 weeks but rheumatology said they will be happy to refer me if I have any further problems with my skin. (Which clearly they already have)

How can there be nothing wrong? After all this..... I feel so upset and I don’t no if it’s because they have given up on me or because I am left to deal with the symtoms alone...

Any advice would be useful right now. I feel like a flat piece of cardboard

49 Replies

Have you thought of ringing the secretary and ask her is she can clarify things ?

BabyOleg profile image
BabyOleg in reply to Oshgosh

I have sent an email back with some questions but I won’t expect much in way of a response. She never usually answers me when I have questions she only ever really replies when I am answering her questions

Soooooo sorry 🤗🥰🙏

Good morning. Sorry to hear you didn’t get any answers just yet to explain your symptoms. This doesn’t mean that you won’t ever get some clarification. It took me a long time to get answers and I’m sure there are many people on this site whom have had similar. I don’t know where you are in the U.K. ? Are you able to access anyone who specialise in lupus ? If you could get to see them, perhaps they can confirm if your symptoms are lupus related. Don’t give up , keep smiling 😊

Hey, thankyou for your message I live in Bristol so probably not unless I travelled to London x I didn’t sleep last night because I really thought I was on the right path to answers and now I feel like I am back to square one :(

The Royal National Hospital for Rheumatic Diseases RNHRD in Bath is excellent for lupus and Dr Tillett is my wife’s consultant. He is very good. She has lupus and fibromyalgia. The hospital has moved from Bath city centre to the Royal United Hospital site in Combe Down, Bath.

Thankyou for this x

Came here to say exactly this. The journey to be taken seriously with anything autoimmune is ridiculously long because at times it can be very difficult to pinpoint. And just think, how many times do you get an appointment through and go to it when you're not in a flare. Typical! And yet, when we're really flaring, we wish rheum could see it. Definitely agree with taking pictures and a diary. What I would also say is that they've not definitively said it's nothing, but they've given you 'undifferentiated inflammatory condition' to go by. In that instance I would be emailing or phoning to say 'ok, if this is the current working diagnosis, then I'd like some meds for it please'.

Sadly, I have only started to get somewhere with my own care and diagnosis as doctors at my work have examined me, told me I'm not going mad and that I need to fight for this. And it has made my rheum take a step back, re-evaluate and help me a bit more. So I definitely agree with a second opinion.

All is not lost and I wish you the best of luck, but realistically prepare yourself for a long journey to come

😔

Unfortunatly they took that diagnosis back after another panel of bloods returned back within normal limits xx I was actually happy with that as a starting diagnosis it was somthing to go on.. but they revoked it almost immediately

Oh BabyOleg, how awful! After all the tests and everything…it is so frustrating to have nothing to show for all your efforts. And that letter sounded so dismissive…This autoimmune stuff is absolutely impossible to pin down, there’s no single test that proves lupus or anything. I only got diagnosed with lupus after 8 years of every test ever conceived, misdiagnoses, wrong treatments, medical cul-de-sacs and second opinions. Best thing I ever did was sought a second opinion. See if you can get a good word-of-mouth recommendation in your area? My second rheumy re-ran all the tests and was happy to diagnose me after that. But yes, it took a staggeringly long time. We understand, we’re here for you.

I lost so much sleep last night over this I think I managed a couple of hours in the end. It just so upsetting when they lead you to think your close to a diagnosis and then shut you down last minute

It’s like a bait-and-switch, or like having the proverbial rug pulled out from under you. I’ve had plenty of doctor’s appts when I thought I would be getting answers (where answers = light at end of tunnel) only to be told, with a shrug of the shoulders, they got nothing. Medicine is still so limited, there is so much about our bodies that is still shrouded in mystery. I hope you get some rest today, and a better sleep tonight.

They took 32 years to diagnose me. Only reason I finally had answers is last Christmas I had 9 pulmonary embolisms. 🤷‍♀️ I don’t get why it is such a hard thing to diagnose.

BabyOleg profile image
BabyOleg in reply to Willow7733

Oh gosh that’s awful glad you made a full recovery!! I mean yes if all the obvious symptoms are sat in front of your face why is it so hard to trial and error treatment if I am willing to try it. I’m 30 I just want my life back

Titters profile image
Titters in reply to Willow7733

It took 30 years for myself. Until the clinical symptoms and bloodwork were supporting each other I received no diagnosis although my GP told me for 20 years I had a slow burn autoimmune issue that just was hiding. I was offered hydroxy 10 years ago When a very good Rheumatologist diagnoised fibromyalgia. I turned it down.

Now I regret that. Could have slowed the inflammation perhaps.

I am so sorry to hear what you are going through .. sadly such a familiar sounding story. I remember what someone on here said .. keep taking pictures , keep taking notes ,even if just for own sanity . Did you go to southmead as I had heard they were really good rheumatology wise ? Sending you massive hug and please don’t ever doubt yourself .. if you feel ill tou genuinely do, it’s not in your mind xxxxxx

BabyOleg profile image
BabyOleg in reply to Tiggywoos

Yes southmead. I couldn’t praise them enough all year but now they have completely shut me down and I just feel it was all for nothing

You know there's something wrong Baby 🤗 unfortunately your bloods are not showing anything right now..but that doesn't mean you don't have something. Rheumatology have not discharged you..they will keep u on for a year so u have the opportunity to go back when things are flaring. They've also referred u to dermatology which will be taking a different approach.

I have a diagnosis of Subacute Cutaneous Lupus Erythematosus (SCLE) and I'm managed mainly by dermatology with rheumy input.

So I'm writing this to encourage u..all is not lost!!

Take your time n be gentle on yourself..getting a diagnosis isn't straightforward unfortunately n it involves plenty of juggling along the way!!

Did u get anything in writing from the eye hospital? They said one thing to you but your rheumy said everything was ok..so there's some discrepancy there 🤔

You're also entitled to a second opinion n I see another member has recommended someone in your area..so again..all is not lost!!

Yes it's a knock back but please don't lose too much sleep over it..once you get your head around it u can dust yourself off n try again.

In the meantime treat yourself to something which gives u comfort n then start prepping for dermy appt 🤗🌈😽😽xx

BabyOleg profile image
BabyOleg in reply to Krazykat26

Yeh my rheumy received the same letter I was sent. And under diagnosis it says episcleritis. And mentions I have been given the immunosuppressive on nurses contact number to call when having a flare for advice and treatment. So that is definatly a clear sign of somthing going on with my eyes .. so how she sees that as all ok is beyond me lol

Krazykat26 profile image
Krazykat26 in reply to BabyOleg

Probably not her department!! 😹 Have u been referred to opthalmology or are u still current patient at the eye hospital? R u getting follow up from them? 🌈😽😽Xx

BabyOleg profile image
BabyOleg in reply to Krazykat26

She referred me to the eye hospital when I turned up to one of my appointments with the most blood shot eyes ever. And then she referred me to dermatology for the rashes on my face. But has since then forgot she did that lol!

Krazykat26 profile image
Krazykat26 in reply to BabyOleg

So eye hospital have said episcleritis and you've got dermy appt in a couple of weeks..presumably dermy will communicate with rheumy so I can't understand why she's effectively saying that she's putting you on hold 🤔Do u have current rash? Sorry for all the questions 🌈😽😽xx

BabyOleg profile image
BabyOleg in reply to Krazykat26

Typically not atm - that’s the way it always goes I have waited 9 weeks for this appointment tho, she put the referent through as urgent but I do have loads of photos. And yes the whole point was to get eye hospital and derm input to make an final desision that’s why I don’t understand what she’s doing right now and once again she’s happy to email me but won’t reply to my follow up questions - it’s so frustrating why can’t she just call me and speak to me

Krazykat26 profile image
Krazykat26 in reply to BabyOleg

Yes that is typical..no rash n dermy appt!! 😹In retrospect my dermy was kinda disbelieving of me but he never made me feel like I was wasting his time. However I flared really badly n my GP got me an urgent appt with dermy..he took one look n put me on immunosuppressant n increased steroids!! 😹Since then he's been more understanding to my plight!! Good that you've got photos..have u got access to your blood results by any chance? Rheumys are supposed to be the "detectives" but it seems you've got Inspector Clouseau!! 🌈😽😽Xx

Oh I am so very sorry. I feel for you. It is no consolation but two years ago ( after ten years of it is Lupus / Bechets/ UCTD) a Rheumy said that the only thing wrong with me was Fibro and hysteria. I was absolutely distraught. Now the new Rheumy is veering towards Bechets again. The road to diagnosis is fraught with inconsistency sadly. Can you ask to be referred to a different Rheumy? Big Cwtches I know it is not an easy process xxx

It seems to be a trend with rheumatology and lengthy diagnosis umming and arring and changing there minds xx Hope your ok the right path now x

I will let it sink in and then when I’m less emotional and have another flare I might try again

But you are hysterical Cecily 🤗 Some of the stories you've told us here have had me in stitches!! 😹😹😹I've spat my drink out a couple of times n had to make quick trips to loo so I don't ACTUALLY pmsl!! 🌈😽😽Xx

Bless you Kat. I am pleased I give someone a giggle because I look at my miserable face and think where has my smile gone. You would have pmsl if you saw my first attempt at pottery last week. I did a toadstool which got wonkier by the minute. If it survived the drying process and gets to the kiln I will post it for a laugh. This week I am trying the potters wheel which will be hilarious. Extra tena ladies at the ready lol xxx

Oh yeah u gotta post a pic of your mushroom...if it survives of course!! 😹I will practice my pelvic floor exercises for next week's pottery wheel class 😹you've conjured up images of you covered in clay with Patrick Swayze sitting behind u....helping u out!! 😳😹

It takes more muscles to smile as we get older don't it..now I'm at this stage in my life smiling is a mini work out!! I do it though..always exercising..me 😉🌈😽😽xx

Omg Patrick Swayze would be great if he wasn’t dead. If I can get anything to stick it will be a miracle 🍄🍄🍄 xxx

That's why I said it...Ghost?!?! I think he was deceased in that one too 😉🌈😽😽xx

A very good looking ghost indeed. I think if I had to be haunted he woukd do lol. He might just help keep the clay on the wheel too 😂 xxx

BabyOleg Hi, Can i ask about your eye swelling please? Do you have any other symptoms when this happens?

BabyOleg profile image
BabyOleg in reply to Liteblu2

I have eye lid odema, sometimes I get eye lid drop and I get pain in my eye balls that cause inflamed blood vessels and make my eyes itch and blood shot

Bloodshot

BabyOleg, What you are having to deal with is devastating. I have said repeatedly about doctors too hung up on labs and not able to think or look outside the box. Theuy want the easy way to do their job. It shouldn't be you who is having trouble sleeping. It is the doctors who dismiss you. A year from now is insane. I was fortunate in getting a diagnosis 25 years ago. That said, I have had to change rheumatologists due to one getting sick and one moving. My new one is all right, but thinks that I am better than I am because of labs. It doesn't matter about anything else or that I am taking more meds. It is all about the numbers. He has students come in first and ask questions, etc. Then they talk to him. Then he comes in and writes the prescriptions. To me if you are going to be a specialist, wouldn't you want to be a bit of a medical detective and leave no stone unturned.

Do not give up and do not doubt yourself. Also, sometimes what you may think is a minor symptom becomes the key. Pictures are also great.

I will keep you in my thoughts.

Haling and hopeul hugs.

I would ask your Gp to refer you to a different hospital. The letter makes no sense. Heading is diagnosis and they haven’t diagnosed anything just stated symptoms which you knew already! Go elsewhere

I am so sorry babyoleg at all that you've been thru and then to get a letter like that. Very upsetting and confusing. I have a diagnosis of undifferentiated ctd and have inflammatory joints particularly.

My advice is they havent told you to cope alone, if your symptoms change or become unbearable use the open appt they've given you to consult them again. When you have undifferentiated ctd it means it can change as its symptoms of several ctd's all vying with each other. They should be keeping a watch on your symptoms as they can change over time. Id also keep a symptom diary and note when it flares and when its better. Doctor's like patterns.

I had to do this over many years before being diagnosed like so many of us on here so keep safe and keep fighting and you will get there. Xx

I’m so sorry. It’s all extremely unnerving isn’t it. You’re not alone in this kind of happening on here. I had definitive SLE diagnosis for 3yrs and was downgraded to Lupus Like Syndrome this time last year. Also have been on off Sjogrens since 2017 and depends which opthalmologist I see as to whether they put diagnosis: Sjogrens and bang on about it obviously being that. It’s exhausting and so upsetting I know. Basically the entry criteria for SLE currently is positive ANA. This may change again, but I’ve got bigger issues right now sadly and have finally given up being upset about the way it was done ie by letter after review phone call with my trusted rheumatologist. They say “all that matters is how we treat you” but I disagree totally - it impacts on your own feeling of being heard, held and understanding of your v upsetting, life altering condition (although I’ve had all my life I know), and also how your other clinicians view you/your needs, or pre op or when in hospital... I do agree I need methotrexate etc etc but I really no longer feel held, reviewed regularly with discussion about changes in condition with discussion potential need for additional medication. My poor gp surgery is having to deal with this under (seemingly non) shared care agreement... and gets no response from my rheumy eg I’m not on any meds currently for my severe raynauds going in autumn as the Nifedipine was giving me diabolical front foot/ankle shins leg cramps. I do feel they are terribly overstretched however. You could ask for a separate opinion but if you see the guideline criteria for SLE, doesn’t matter if you have all relevant symptoms... if you aren’t positive ANA right now, you’re undifferentiated or like me “Lupus Like Syndrome”. Have you gone through the current guidelines? It does help you feel a little more acceptance. I hope you’re ok... I totally get how you’re feeling. Take care x

BabyOleg profile image
BabyOleg in reply to DJK99

I guess in the end we either tire ourselves out fighting or give up and accept what they say.

stiff19 profile image
stiff19 in reply to BabyOleg

It is tiring for sure but no, don’t give up if you need answers, you know how you feel, it’s human nature to want answers and when it’s your health I think want turns to need if things don’t get better or get worse but if meds help with acknowledgement of your sufferings you may not want the Rocky journey , I intermittently give up as it’s exhausting mentally, but then poor health continues and the recouping strength when give up helps push me on along with the support here ,but either way support is here for you , tomorrow is another day 🤗x

So sorry and there’s been many words of wisdom in replies you’ve had already, I can only say , you are not alone, I have to manage symptoms of unknown alone it’s hard, it’s a hard journey( I’m years in already) to find answers , but hang in there, it’s your health so don’t give up, no answers yet but hopefully you will find them, it’s so harsh, I speak from experience and totally empathise , the hardest thing is keeping your head above water amidst the madness, but the support here will help you do that, most importantly take care of you and your emotions and stay strong 💪 it’s one step forward 10 back it seems but staying strong will help you on your journey . I have crashed and burned much, it only makes health suffer more so take a breather, as KK says be kind to yourself then you’re ready to continue on your journey, which it sadly but certainly is. Thoughts are with you 🙏🤗x

Thanks stiff xx you guys keep me going x

stiff19 profile image
stiff19 in reply to BabyOleg

🙏 I’m glad , you all keep me going too 🤗xx

Hi, I was sorry to read your post but not entirely surprised either. I have. 30 year history of what you describe but have and have never had any antibodies to anything. My diagnosis is UCTD/SLE and I’ve had the ptosis too.

Diagnosis is really tricky and for the doctors to get it wrong by labelling you too soon could actually be to your detriment. I was referred to Prof Gordon in Birmingham in 2014 (she’s retired now) but you are entitled to ask for a second opinion. You could also ask for a trial of steroids to see if they alleviate any or all of your symptoms.

It can be a lengthy process to g wet diagnosed and my rheumatology letters are consistently chock full of errors so do set them straight as often as you feel the need.

Hugs xx

UPDATE!! - guys I can’t believe it!! I went to dermatology today! She looked at my currently flared eye, my photos of my rashes my symtoms listed by rheumy and has confirmed it’s lupus based on everything and had it not been for me being pregnant I would be starting on treatment - so she’s told me to call if I am having a bad flare but otherwise she will see me again in 4 months and when baby is born I will be starting on hydroxy - SIGHS A HUGE SIGH OF RELIEF! ... she promised she won’t give up on me.

Pumpkin2009 profile image
Pumpkin2009 in reply to BabyOleg

That is great news. Take good care of yourself and the baby.

Healing hugs.

DJK99 profile image
DJK99 in reply to BabyOleg

Wow. That's truly amazing... So very glad for you! What a relief... I know that is how I felt 4yrs ago when my Rheumatologist diagnosed me with SLE on the spot. The relief of the clouds clearing... with certainty about what it is you're going through day in day out. Being heard! As mentioned previously, he changed that to "lupus like syndrome" last year due to suddenly deciding my seronegative ANA WAS important enough to take me out of the SLE bracket. I wonder what your Rheumatologist makes of it... be great to know. Cutaneous Lupus isn't SLE but is obviously part of that with the other symptoms. Let's hope your Rheumatologist is able to diagnose you appropriately now too!

My previous Ophthalmologist seen in April says I have Sjogrens (on top of lupus) but the second one I saw was extremely dismissive and blindsided me, saying only my Rheumatologist can make that call - and my Rheumatologist ignores my emails about it. I'm screamingly obviously Sjogrens. Very disheartening and worrying as the ramifications of Sjogrens are quite serious (and my mother had/died of them!) and therefore need to be recognised, monitored etc.

Anyway, BabyOleg, what a great day for you... so important to be diagnosed correctly. Hope the pregnancy goes well and all starts to fit into place with being assessed correctly now, with relevant support and hopefully excellent outcomes.

All the very best, D x

BabyOleg profile image
BabyOleg in reply to DJK99

I’m so sorry to hear about your mum - that on top of being ignored must be extremely worrying and concerning. And also frustrating having a diagnosis then having it stepped down. Are you still being treated? How do you feel? I’ll never understand why professionals don’t work together sit down together and discuss patients cases and come to a mutual agreement rather than keep passing the buck - because that ends up in a lengthy path of no diagnosis and the person in question always suffers for longen required - such as you for instance.

What are they doing for you? Are you still under investigation?

Yes I belive my rheumatologist doesn’t quite believe it (after telling her what the dermatologist said) so is referring me to a consultant who specialises in connective tissue diseases for his opinion - along side the dermatologist (who was sooo nice and when I got upset and told them I felt I was being given up on, said she just wanted to hug me) that was quite sweet.

So I guess within the space of 3 hours of seeing the dermatologist then the rheumatologist I am now back to them figuring it out together. - 10 steps forward 5 back.. haha

I mean.. I can’t make my visible symtoms up so bloods or no bloods - it’s happening and it’s real. And I’m almost at the point now where i just want it to go away and willing to try anything to help that.

My main concern atm is that my baby is healthy and I don’t stress myself out too much. I have my 12 week scan on wed and after 2 MC - I’m praying this one is healthy and happy.

Hope this message makes sense I’m tired. Haha

Sorry if it doesn’t

DJK99 profile image
DJK99 in reply to BabyOleg

Oh I’m so very sorry to hear that. Yes, you need to relax and take it very easy. They need to look after you too.. your clinicians. Yes, am definitely still being cared for. Am quite complex health wise with a lot of health concerns right now. Just recovering from mastectomy. Big one. I am on methotrexate for the lupus and sjogrens. It’s only labels they say.. but, well, it kinda leads to trialling the right drugs to get an improvement in our health! My bloods some way there v low complement 4 and comp 3 up and down, and autoimmune neutropenia, anaemia, and er had anticardiolipin and positive Igm at one point too. I’ve had all this all my life but now much worse as 58.5! Read many timed positive ana and the rest can disappear if had v long time.. Dr Wallace (?) lupus chap has published that in books, papers and recently in addition to guidelines. But depends on who believes what. Hardly an exact science.. as my breast clinic registrar and surgeon said! I’ll say. Anyway. For now you have to keep yourself nice and relaxed and not over doing anything - pacing yourself has new meaning in your condition with lupus. Let us know how you get on. Gentle hugs x

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