First apppintment

Hi all. I haven't been on here for a while. I had my first appointment with rheumatology this morning. She has said that although all my symptoms fit with Lupus the blood tests are negative so I haven't got it and nor do I fit the criteria for any other sort of autoimmune illness. I'm glad for that but it leaves me wondering what the hell is wrong. Perhaps this is just my life and I have to learn to manage with all the pain, fatigue and the other 101 problems I have. Well, I have been managing for a quite a few years now so I guess I'll just carry on. I'm not sure if it's possible to have a Lupus like illness which doesn't show on blood tests. I am puzzled because all my symptoms fit with it and the rheumi said if the tests weren't negative she would say that's what it is. Hat do peop,e think. Should I persist or should I just forget it and accept the way I am and continue to get on with things.?

16 Replies

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  • Dearest Chezchat,

    My heart goes out to you - I've been in your position and you start to believe that it is in your head. Please don't give up, you know your own body and there are sooo many autoimmune diseases then maybe it's not Lupus but something else. I don't know enough about Lupus as I'm waiting for diagnosis (hopefully get some answers today!!) but I do know that if you're not happy with your diagnosis, find a rheumy who will listen to you as a whole person - not just a set of blood tests.

    I know the wonderful guys on here will be able to advise you further so: Do Not Give Up Hope!!

    Keep fighting chick 😘😘😘

    Charlie xx

  • Thanks Charlie

  • Hi Chezchat,

    Does you consultant have any idea what may be causing your symptoms if it is not autoimmune? Are they doing any further tests and investigations?

    Blood test results are not always positive for lupus and some consultants do recognise cases of 'seronegative' lupus. Sometimes having symptoms of lupus but not enough criteria for a diagnosis can suggest that a diagnosis of undifferentiated connective tissue disease (UCTD) is appropriate and this is often treated the same as lupus.

    If you are unsatisfied with the diagnosis and treatment plan set out by your consultant it may be worth asking your GP to be referred for a second opinion. You may want to request a referral to a rheumatologist with a specialist interest in lupus who will have more experience in identifying the less 'typical' cases of lupus. If you let me know what area you live in I would be happy to provide you with information about any lupus specialists we know near you.

  • Thanks Paul. I was given no indication of what might be causing the symptoms. Just told that without the blood tests the rheumy would say Lupus. With the negative bloods no diagnosis or suggestion of what else it might be. The other thing is that I'm having quite a good patch at the moment so I appear happy and healthy even though underneath I still have pain and fatigue on a lower more manageable level. I also manage to work full time and I do a fair bit of cycling. The Rheumy said I am doing everything necessary to manage my symptoms and therefore there is no further advice she can give. I really felt she was thinking 'there's nothing wrong with this woman'

    I am in Norfolk and am seriously considering a second opinion even if I have to pay for it.

    I fit the criteria for something of this nature, all my symptoms fit. But like Charlie said, I am starting to think I am getting paranoid. However, this time of year is always much better for me. Come next December I will be struggling again and if I get a cold I'm in serious trouble because I struggle to get better.

    Anyway. Information on any local specialists in Lupus would be good, thanks. I'm in Norwich in Norfolk and would be happy to travel.

    Thanks so much for your help and advice

  • Sorry you have been dismissed in this way because of negative bloods.

    I was diagnosed with and treated for RA six years ago. But after four years my rheum said that it was seronegative and non erosive so far therefore best I stopped taking drugs that were making me so ill. I was delighted but continued to get sick a lot and as I clearly did have autoimmunity he carried on treating me with a low dose of steroids.

    Then I relocated and a second rheum said exactly same as yours has and only reluctantly acknowledged that I may have had some kind of "polyarthritis unspecified". But he said that I absolutely didn't have Lupus or a connective tissue disease. When I asked what could be causing my neuropathy to return as I came off steroids he just shrugged and said not his bag as non rheumatic.

    I came off all steroids and moved again and last year, on strength of a newly clear positive ANA and high inflammation levels, had a lip biopsy which showed 100% positive. I was then rediagnosed with primary Sjögren's - which can imitate both RA and Lupus.

    I suspect the second rheum I saw wouldn't have rechecked my antibodies and might have failed to identify my longstanding Sjögren's. I feel he should have known that RA- like symptoms and widespread small fibre neuropathy such as mine clearly pointed to Sjögren's, and that six months on steroids had merely masked some of the classic symptoms and antibodies.

    So my advice to you would be to regather yourself and hunt for a rheumatolgist who may hopefully be willing to look beyond your negative bloods. Try to keep an open mind as there is great overlap often between the connective tissue diseases. If you feel well over the summer months then this may point more to other such as UCTD, RA or Sjögren's.

    Whatever - no one should be left without any kind of explanation or further investigations into the cause of their symptoms I feel.

  • Thanks Twitchytoes. This is very helpful.

  • Hi Chezchat,

    Did you go to the Norfolk and Norwich hospital? I believe their rheumatology team is fairly knowledgeable about lupus and so it could be an option if you didn't go there yet. The other nearest specialist is probably Dr Frances Hall at Addenbrooke's hospital in Cambridge.

  • Thanks Paul. Yes, I was at the N&N. I fully accept that it is not Lupus but there is definitely something not right. I will pursue with my GP at some point when my general review is due. For the moment I am coping well and feeling better than I was.

    Thanks so much for your help and advice?

  • Hi chezchat

    I live in Suffolk. When I got fed up with my local hospital I asked for a referral to London hospital. My go asked for a appointment and that was all that was needed.

    Hope that helps. Don't ever think it's all on your mind. There are lots of things you can have without it been Lupus. Just keep on going you will find it on the end. The London hospital found o have fibromyalgia as well as Lupus so I now take stronger pain relief Now it's bearable

    Good luck let me know how you do.

  • Thank you.

  • Hi. I wanted to reassure you that not all consultants go solely on the blood tests and if your symptoms continue I would advise a second opinion. I had this for years being told there was nothing showing so couldn't have lupus must have ME/FIBROMYALGIA/MIXED CONNECTIVE TISSUE DISORDER these are just some of the diagnosis I had. THEN after seeing someone else there showed a mild rise in my double DNA one of the more specific tests and this was enough for them to give me label of mild SLE and as years have gone on I have had other conditions that are associated eg. Reynaud's/hypothyroid to name a couple. The name doesn't really matter but it gives you some sense of being believed and I have been on hydroxy and low dose steroids for long time which has kept me fairly stable. So I would advise keep looking for an answer if it is affecting your quality of life. You are best judge of your body. Some consultants are too set in their ways and won't look beyond the numbers some will. Good luck!

  • Thank you. Yes, it's not that I WANT one of these things, it's just that in the winter specifically I am often off work ill. It would help me if some sort of condition or diagnosis was recognised so I am not discriminated against due to my sickness levels.

    Thanks for your help and advice

  • I totally understand and have been there!! Keep trying even if you get what they call an undifferentiated diagnosis eg they can't pinpoint it but they accept something is going on, and you have support of a consultant, then your employer has to take note, make adjustments etc etc. Good luck!

  • Hi, I feel exactly like you. I have been diagnosed with Discoid lupus and told it only affects the skin. I have multiple other symptoms :- reynauds, joint pain,fatigue and digestive problems to name a few. Blood tests are negative for sle and the rheumatologist says I don't fit the criteria but recommended hydrxycloroquine. The dermatologist has put me on this anyway as steroid creams were having no affect on my skin lesions. Just started this and know it can take a while to show results. I know there's more going on with my body than just Discoid and just try to manage accordingly. My gp has been great and very understanding and has done all he can to help.Hopefully we'll get there in the end.

  • Dear Chezchat

    I know that you probably feel like you're not able to request a second opinion but please summon up the strength to do so. Even if you don't have a good GP, take someone you trust with you for support.

    I've just seen Dr T at LLC and he thinks it could be some form of connective tissue disease/ APS. The only positive bloods I have are my anticardiolipin antibodies. But he is still putting the pieces together which is all I ever wanted. I have so many different symptoms and I am confident that he will get to a diagnosis. I have had an injection of steroids (sore bum 😂) to see if this helps. If it does, it's another piece in the jigsaw, if it doesn't, it's still another piece of the jigsaw. I did ask him outright that if it was all in my head and he laughed and shook his head...had the feeling he'd been asked that before...

    Keep fighting chick, let us know how you get on

    Charlie xx

  • Hi everyone.

    Thank you all so much for your help and advice. I really appreciate it and it is comforting to know there are lots of people out there who get where I'm coming from. I have decided to sit tight for the summer now. I am feeling pretty good at the moment. I am concentrating on losing weight and getting a bit fitter to see if this helps.

    Its interesting that I have felt loads better ever since I was given a massive does of antibiotics for a terrible throat infection. I'm not sure why that would be but I don't really care as long as I feel better.

    The symptoms are still there but are manageable. If they get worse again or if they become unbearable over the winter I shall return to my GP who is very understanding.

    I am actually quite tired from just keep thinking about this and wondering what it is. So, it's being pushed to one side and I am going to just try to get on with enjoying my life.

    Thanks all and I shall still be checking out this page as I find it an enormous support and also confirms some of the things I suffer when I see others are the same.

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