No diagnosis

[Pastalasta]

Hi. I've been ill for a few years and twice had blood tests for Lupus but as all came back clear I'm not sure what I can ask the GP to try next. He is adamant that's as bloods clear there isn't Lupus.Is he correct?

[Suvi8901]

”He is adamant that's as bloods clear there isn't Lupus.Is he correct?…”

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He’s a GP not a specialist lupus doctor so you need a second opinion!👆☝️Is he/she actually qualified or experienced enough to say your blood test results are clear?😳🙄☝️

Lupus tests are complex!

He/she should at least refer you on to a CONSULTANT doctor by writing that letter?!

[Pastalasta in reply to Suvi8901]

Thanks for that. I will have to go back and have another try.Would any medical consultant know or would it need to be an auto immune specialist?

[Suvi8901 in reply to Pastalasta]

Of course an autoimmune disease (AI) specialist/lupus doctor would be most appropriate . Difficult to have one in the NHS.

Most lupus sufferers have a range of different medical specialties eg for complex red rashes: dermatologists! Some will do a skin punch biopsy to examine for autoantibodies in the skin sample!

For SLE (systemic lupus erythematosus) which means lupus has affected organs, tissues etc you should see a nephrologist eg lupus nephritis OR rheumatologist who will look at levels of your inflammatory markers in your blood!

In the first instance for lupus it’s usually the rheumatology dept!

[Pastalasta in reply to Suvi8901]

Thank you. It's all so complicated and I have felt so lost.Thanks again

[StriatedCaracara]

Some rheumatologists seem to be using the 2019 EULAR ACR SLE Classification intended for research to also diagnose. These only look at the highest scoring symptom and only lupus nephritis scores the necessary 10. Otherwise joint pain serosis etc score just 6. This then requires 4 points from positive blood test.

In the past rheumatologists used more than 4 of 11 symptoms system that is on lots of websites still -so confuses us, and some folk got diagnosed without positive bloods.

Also, the 2019 classification criteria require a postive AntiNuclear Antibody (ANA) blood result as an entry criteria to even start to accumulate a score.

Re stricter criteria - I believe this is happening with no end of other conditions too, so believe GPs are getting totally fed up with a system driven by research needs and cost cutting, rather than broader patient needs.

Some rheumatologists, who are probably more experienced, and don't need to conform, are prepared to say the system for diagnosis is now broken.

May be worth hearing what Dr Donald Thomas says about it all - Tests are out of date. Newer, much better tests are available but not been approved because of old tests included in 2019 Research Criteria which so many hold in high regard otherwise it wreaks their lucrative research.

Linking in to another post below:

healthunlocked.com/lupusuk/...

So some folk with negative bloods, get lupus nepritis or other organ damage as not treated in timely fashion. I learnt I needed to try hydroxychloroquine and it was a game changer. In some places GPs can prescribe this eg rural areas in the US.

Dr Thomas is an excellent American rheumatologist who has written the Lupus Encycleopedia. He has a good blog too.

I am diagnosed with 'Undifferentiated / Undefined Connective Tissue Disorder' instead. My treatment is the same. I needed to go private, without insurance as local NHS failed to help. GP then said he would send me anywhere in UK to get treated, as so much obviously going wrong. Did not want to repeat the experience so went private, like some others in some areas of the UK, but some NHS trusts do have UCTD mentioned on their Rheumatology page. Mine said too difficult to diagnose. Not currently eligible I expect for research they do or maybe just not young enough to be seen as worthy of limited help they had ..it was a rubbish experience.

[StriatedCaracara in reply to StriatedCaracara]

Maybe your GP could be given the link to the Dr Thomas video on blood tests. He describes young patient who eyes were affected and sight greatly diminished because bloods were relied on and diagnosis missed.

[Pastalasta in reply to StriatedCaracara]

Thankyou so much for all that info. I will take the time to go through it all and then present to my GP and be prepared for the rolling eyes!

[Jenfy34]

What blood tests have you had done? Are all your blood tests within normal range?

[Pastalasta in reply to Jenfy34]

Not sure but definitely ECR &something else. I'm rubbish at this I'm sorry.

[Love2fish2]

I’m so sorry you’re not getting answers as to why you aren’t feeling well. A positive ANA (blood test results) is what says you have Lupus. Did your GP do that particular test?

[Pastalasta in reply to Love2fish2]

Not sure definitely ECR but there was something else and both normal

[KayHimm]

Hi Pastalasta,

You have been sick for a long time. That is hard, particularly when you don’t know is wrong.

Did the doctor offer any explanations about what is wrong? Could you share your symptoms?

Kay

[Pastalasta in reply to KayHimm]

He did think Giant cell arteritis but as tests normal they have decided cluster migraines but that doesn't explain fatigue, fingers turning blue and hurting. Feet sometimes as well. Don't have the rash over nose as such but I do have redness in butterfly shape. My temperature is too hot or too cold and not in sync with weather conditions. I have wrist and ankle joint pain. Headaches that come and go randomly with teeth jaw and gum pain. Eye aches. Optician and dentist can find nothing wrong.

[nottypical]

Does he agree that there's something wrong?

If so he should be perusing a diagnosis

If not, then can you go to a different GP?

[Pastalasta in reply to nottypical]

He sent me to hospital as suspected giant cell arteritis but as bloods normal the medical consultant has said cluster migraines!