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LUPUS UK
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Struggling to get a lupus diagnosis ?

My wife received her diagnosis in December last year after many years of illness and searching for a diagnosis and treatment. Things are just stabilising now and thought we would share our experiences and tips to help all those who are still in the battle.

1. Stay away from doctors who dont understand or even some who dont believe in lupus. They can do you much harm and at the very best frustrate and delay treatment.

We once had a senior consultant in all sincerity say that the treatment for auto immune conditions is to increase anti depressants. Unfortunately in our experience there are a lot of them about.

2. Go to a lupus specialist even if you have to travel - its worth it. This is all they do so they will look past negative ANA / dsdna to look at you and all of the tests and all of the symptoms.

3. Dont give up. Sometimes it feels like the world is against you. Persist and you will get there.

4. Do your research. Have a view on what you have and why it will give the doctors something to disprove.

5. Try and bring family and friends with you - they can be great support

6. This forum and the people who post on it are brilliant. If you got it then the chances are someone has had it before and knows how to deal with it. So post your problem / question and you will discover you had a hidden army on your side and with you.

If you cant post search previous posts - they nearly always turn up gold.

and lastly just to thank all from pooh bear (the wife) and me for all your advice, help and support for all who have posted in response to my problems and questions. You have helped us both so much.

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WOW: GRRRREAT POST jimbo! THANKS for this HAPPY news + wise experienced advice! CONGRATS to Pooh Bear, you & your medics! You’ve Made My Day! Hope you’ll keep us posted on how things go! Wishing you every best wish

🍀🍀🍀🍀 Coco

PS hope your son is coming along “ok”

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Hi Jimbo1605. Just to say thank you for your fantastic post. Heart warming and encouraging, and very useful tips for me (still struggling and fighting to get appropriate treatment, despite having a diagnosed autoimmune condition (UCTD)).

It's really good to hear that Pooh bear is stabilising and that all your hard work and effort is paying off 😉.

You've really given me hope that continuing the fight can have a good outcome...so thank you and continued good health to you both xx

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Thank you so much for your advice and hints for how to manage our way through this horrible illness. Thanks too to pooh bear x

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Hi jimbo1605! This is incredibly sound advice in a nutshell - especially about doctors than can do harm - and I wonder if our hero Paul_Howard can maybe pin your post for a fabulous 1-6 on the way to go? This forum is indeed a godsend! Fingers crossed Pooh Bear reaches a stable situation soon xxx

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Nice idea eekt. I will pin the post :)

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Can I thank eekt and all those who have replied and liked the post and I didnt quite anticipate it receiving such a response.

Pooh bear (the wife) has been blessed with the care of many good doctors and nurses but unfortunately we had to fight our way past obstructive and unhelpful medics who should have known better. She has gone from bed bound to nearly functioning normally over the space of 18 months. The only remaining issue is a stubborn breathlessness problem which means she cannot get below 3 prednisolone per day without her heart rate racing and her o2 sats falling. The current thinking it is a blood rather than lung issue.

Pooh bear was named by my family (mainly me really) because of her kind nature, positive outlook and all of the symptoms of lupus brain fog (forgetfulness, away with the birds etc). At the time we didnt know pooh had lupus so it seems a bit cruel now with hindsight. However, since being prescribed blood thinners pooh has suddenly become super sharp, remembers everything (not always a good attribute). So we have lost our Pooh or Pooh has lost a certain Poohness. We have decided the name will stick even if she is a Pooh on steroids (literally).

Thank you all for your kind words, thoughts and help.

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This smells like team spirit 😎 your both so lucky to have each other x

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Thank you for posting this. I am currently on a Sjögrens/lupus overlap diagnosis that nobody is taking very seriously and I feel rubbish!! Your message has made me 😊

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🙂 Your name has made me smile...hoping you're getting somewhere in the diagnostic odyssey...keep posting and let us know xxx

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Such a lovely post to read . Thank you for writing this. So many relevant pointers .

X

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Well done Jimbo 🙂

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This is one of the best posts I have ever read on this wonderful forum. Thank you!

I totally agree with everything you say about about a hidden army on your side and with you on this forum.

Wish your wife the best from me. She is lucky you are her warrior. You are a wonderful husband.

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Hello jimbo1605,

Thanks for all the advice. Brilliant.

I’ve been suffering with SLE, DLE and serious lupus nephritis (class 5) for nearly three years.

No GP can diagnose properly. Just not up to speed, not in their training manual?👎

One must have several lab tests for ANA,

anti -ds DNA AN etc as ordered by consultant hospital specialists!👍

eg (ANA= antinuclear auto antibody)

All my prescribed medication is consultant led and GPs generally admit to me that they will not alter the dosages. Honest about their own ignorance🤔. Hence must have faith in my hospital consultants who are good.

Check out a previous post of mine giving essential reading.

Check out:

healthunlocked.com/lupusuk/...

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Jimbo1605. Just a little update for you...

I read your original post when I was in quite a dark place, having had a particularly bad appointment with my then rheumatologist.

Your post and the people in this forum, together with support from LupusUK, gave me the strength and determination to not be beaten and to carry on searching for a rheumatologist who understood autoimmune disease. So...

I have recently been seen by Prof C Gordon at the Lupus Centre of Excellence in Birmingham, who has diagnosed me with Lupus and put in place an appropriate treatment plan, together with arrangements for ongoing care.

It's taken thirty years and another four of trawling round endless 'ologies' (including other rheumatologists) to finally get the right diagnosis and the prospect of starting to become well again (even if not as before, any additional functionality is bonus).

To any who reads Jimbo1065's advice...it's brilliant advice...follow it, be determined, be strong, and don't give up.

With love to yourself and Pooh bear and thanks for dropping your wee words into the forum...just when this person needed them most.

🥰 xx

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Just see your comment pop up on my feed and felt I needed to say “well done for keep fighting and pushing through “

I hope in a strange way you are feeling relieved. Time to process this and push forward to make your quality of life much better xxx

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Thanks Lisalou19. Really appreciate your comments. Going to post in main forum so that I can update and thank all who've helped me to get here.

And yes, I'm relieved...very relieved. It's not so much of a surprise 'cause I've always know that I 'fitted' the disgnostic criteria...but still a little odd to have this confirmed. Processing 🤔😉😀.

It's been a long haul with some very unpleasant rheumy's along the way.

At least now I have a more appropriate treatment plan and can start to focus on getting a better quality of life.

Can't tell you have very excellent she was...just wish the level of expertise, care, and understand I received from her was available to all with autoimmune disease. Shocking that it's not 🤷‍♀️🤦‍♀️🤬.

Xx

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Foggyme. Thank you so much for the update both Pooh Bear and I were so pleased that our mistakes (and there were many of them) and the things that worked have been of some value. I am delighted you are now on the way to a happier place and I sincerely wish you well.

I think one of the things we found most difficult was the not knowing what is wrong and being told by senior medical professionals that there is nothing wrong. Pooh Bear on many occasions thought she was imagining everything and was collapsing into a black hole of insanity, fatigue and pain. The diagnosis made all the difference both to the physical symptoms and to mental wellbeing. Pooh Bear is back to enjoying life now and this we wish for all who are going through this turmoil.

The true Hero's of this the many regular contributors to this forum who give their time, experiences and knowledge so freely and so well. Without them my Pooh bear wouldnt be skipping through the fields, throwing sticks into the stream and devouring loads of honey (the honey thing is true the rest poetic licence)

My very best wishes to you Foggyme and thanks for the post

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What a great post! So much good information and advice. Looking back on my rollercoaster ride since wrongly diagnosed with SCLE in October 2013, I wish I had gone straight to the London Bridge Lupus Centre. I finally got the right diagnosis there in April 2017. Hindsight is a wonderful thing. I say to anyone who asks, don’t waste any more time with other doctors and go straight there. Thank you for your post and best wishes to you and your wife. x

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Brilliant - so pleased it all worked out. Thanks for the great advice.

I’m still waiting for my rheumatology appointment - scheduled for 30 May - first available one !!!

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Your words offer hope and support and I wish you and wife well 🙌🏻

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Hi

I am just about to give up having been totally disregarded by rheumatology but worsened a lot in last year and have a years worth of photos and diaries only they do not want to look at. It could be lupus or some other connective tissue disease but my question is as I don’t know what it is how do I know what specialist to look for. I’m not coping so well now and have wasted a year on rheumatologist who blatantly ignore clinical presentation.

Thankyou

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Stiff19, Sorry I read your earlier post just now but after my reply. Having now read your posts why not consider another tack.

Write down the top 2-3 symptoms that most impact on your daily life and document how what where when of each of them along with what would make life easier for each of them.

Do as much digging into each of them and what will make things better - meds, diet etc

Go to GP ask them to treat each - if they cant then ask for referral in that area

If you focus on the symptoms with a specialist in that particular area you might have more success - pick them off one by one and let someone join up the dots later.

You have some great replies and suggestions from others who are excellent and supportive as ever.

Please let us know how you get on

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Thankyou jimbo, that is sound advice and I had given this some thought and may try to put into practice later .

Will do

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Hi Stiff19 and thanks for making contact.

At the outset I would mention I am not a medic and just have the experience along with my wife of dealing with the system which makes it so difficult for people like yourself. My suggestions to think about are :

Lupus specialists are invariably Rheumatologists who spend most if not all of their time dealing with auto immune illnesses. The more you get to know about these illnesses you more you realise how little we do know and how subjective the assessments of what illness you have and how to treat it. Doctors mostly dont do subjective subjects very well its not in the training and for most to admit i dont know demonstrates weakness. This situation is compounded by the lack of time allocated to each consult so anything that is not standard cannot be dealt with in the time.

So based upon our experience and indeed that of many others you are more likely to get to a conclusion by someone who has a detailed knowledge of the subject and who is more comfortable dealing with the ambiguity that these illnesses so often present.

I suggest a good starting point is the lupus centres of excellence published on lupus uk. Ask the forum for any suggestions of consultants in your area who deal with the sort issues you face. Have an idea of what it could be - at least there is a starting point for the specialist. The forum here is great for linking symptoms to what it could be.

It may seem a struggle now but you will get there. Use the knowledge and support of this forum and it will help you and you will realise there are many people like you and the vast majority have a diagnosis and treatment.

My thoughts and best wishes.

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Thankyou for replying I appreciate it I will gather myself and start again. Only problem is I don’t know what it could be anymore as so many things have similar symptoms, and when you have more than one problem it seems like nit picking but I can’t help that all the things happen at once. Very frustrating . Yes I see on this forum I am not alone at least and I will use the knowledge later that comes my way and Thankyou for sharing yours 🙏

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my wife and I about two years ok had a 40 minute session with a consultant in which he read out each of the blood test results and after each one pronounced NORMAL this went on for over 100 results. So we have gone from this to a point we pretty much know all the sources of her problems some of which are SLE and some not. You can do it - stay in touch.

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