Getting diagnosed

Hi. Can anyone advise me on the best place to get diagnosed for lupus? I have been suffering from endless symptoms and the more I read about Lupus the more I am convinced it is what I have and the last month I have really struggled with shortness of breath, chest pains, exhaustion, swollen glands in my neck and armpits, headaches, very sore muscles and joints especially in my legs which sometimes also feel weak and have given way a few times, rapid heart beat, nausea, sharp pains throughout my body especially in my arms and fingers (and thats not even all!!) I was referred 5 months ago to cardiology in west suffolk and infectious disease at addenbrookes but they have been no help! Apart from various blood tests I have just been referred to a dietician! I feel like I'm going round in circles and nobody is listening to me!

20 Replies

  • It could be lupus, but it could also be something else, if you feel not heard by the doctors try talking to your GP about your suspicion. The GP may agree to check you out for lupus & if so then you can get the right treatment to help you.

    Have you seen a Rhumatologist yet? If not I would ask your GP to refer you to one as soon as possible.

    Good luck, I sincerely hope you get some sort of diagnoses soon.

  • I have mentioned it and I eventually got tested for sle but it came back negative... is this worth being retested? And are there other tests for different types? I will be asked to be referred to a rheumatologist tomorrow but i don't know what else I can do! Thanks for your help!

  • Getting a referral to a rheumatologist is good advice. It may be worth getting re-tested because the results can fluctuate sometimes. It is likely that a variety of autoimmune conditions could be the cause of your symptoms and each presents slightly differently and have its own clinical markers. Rheumatologists will have the best experience to diagnose the cause of your symptoms and hopefully get you on a road to recovery.

  • Thank you Paul! I will be sure to mention that to my doctor next week! I have had more bloods today but it's hard to find a solution especially when the specialists and doctors don't communicate with each other... I have been tested for ANA today which I was told should show up if I have lupus... It's just a very long and frustrating process of finding someone willing to help!

  • Are you of menopause age ? Menopause can cause all these symptoms and more .

  • No I am 27, but i don't feel it! I took a course of isotretinoin for my acne end of last year which I think may have triggered something....

  • If your Lupus tests have come back negative then your GP should look to other options as to the cause of your symptoms. If your GP wont retest you then find a private doctor who will. This way you will be able to elimminate Lupus once and for all. I had to use a private dr to get my diagnoses as my GPjust didnt know what was the matter.

  • But I need to be referrd by my doc to go private aswell?? She has pretty much done all she can and has been on at the infectious disease clinic for an appointment but now they are fobbing me off!

  • Lupus is very difficult to diagnose as we found out this year with my daughter. She was diagnosed with having Mixed Connective when she was 12/13 so was treated for it, and at the end of April this year she was addmitted to Gloucester Royal a very very sick young lady. We landed up with a 3 month stay on the reanal ward coz she ad kidney failure. We were told by the specialists there that You have to have 99.9% of lupus symptoms to be diagnosed with it, it's a very tricky one is Lupus. Must say the whole family has been dragged to hell and back but things are slowly getting better.

  • I understand your situation I have been in the same for about 7 years now I saw a specialist who did blood tests hadn't got a clue what was wrong then realised I had COPD asked if I took steroids and then blamed all my symptoms on the steroids.

    He discharged me and sent a letter to my gp with his findings and even my gp was confused why he came to the conclusion.

    When I have a flair up of COPD I wont take my steroids now and still I'm getting the same symptoms I have come to the conclusion it is easer to suffer in silence

  • Yes it certainly don't help when everyone contradicts each other! That's a long time to suffer and don't give up as hard as it is I know! I have had repetitive problems over the years but now it's got to a point where I know my body's limits and something needs to be done! I think I'm waiting on one or two more results and that might be one of them. I know it was 4letters but my memory is terrible... I just feel like I'm going round in circles. Have you tried going private? I think it's my only option left to try!

  • Yes I would go private but I don't want to see the idiot I saw on the NHS so I would go further out of my area. I am covered in purple bruises at the moment my shins are itching like mad and I have flu like symptoms and can't keep my eyes open.

  • I find it appalling how people are treated! It just causes so much stress making us even more ill than we were to start! I feel your pain... I went to the doctors today which was a complete waste of time sending me for more bloods Ive already had done at the local community hospital. My legs almost gave way on my way home and the pains in my knees are unbareable! I struggle to catch my breath and the pains in my chest, back and head are so intense all I can do is rest... I've been off work 3 weeks now and worried I may lose my job/struggle to live with such little pay. Its never ending!

  • Hi Vicky I feel that all people with long term illnesses with no cure like COPD and Lupus should be automatically ESA & PIP instead we have to fill in forms some as thick as a telephone directory wait 12 months and then be turned down and have to wait another year to go to a tribunal and all while we are feeling like c**p, and lets not forget how venerable people with COPD are going in to public places.

    I hope your feeling well soon but more important get some answers as to why your feeling like you do I really don't care what they call it, it's not about the label but the treatment and feeling normal again

  • Yes I completely agree! It's not fair at all, and very frustrating! As if life aint short enough, we are spent wasting our time on things like that aswell as spending most of our time unwell! Yes it doesn't matter about the label, as long as they find out what the problem is and how to fix it! I look forward to the day where I hope to be my usual active self! Hope you feel better :)

  • Thank you take care and keep us posted

  • There is an excellent Lupus and Vasculitis Clinic at Addenbrookes headed by a Dr David Jayne ( Nephrologist ). Ask for a referral there.

  • Ah brilliant thanks. I didn't know that!

  • Hopefully if it's not Lupus they can suggest who to see next.

    Sero negative Lupus is contentious but they have the knowledge to look beyond blood tests and take the whole picture into account ( symptoms and bloods ). I hope you can get a referral.

  • Sometimes S.L.E. is very difficult to diagnose, at least mine was 20 years ago. One can suffer from so many ailments without a diagnoses, many patients way back then were considered to be neurotic. However after many admittances into hospital with various complaints.......the day finally came, I had Lupus. What was it, I did not have any idea, yet glad to discover I had not been imagining or pretending.

    My blood tests eventually showed I did indeed have the condition.

    Please let me assure you that when you first present, it normally is when the illness is at his worst. I smiled when I realised that I typed 'his'. That reminded me of another very important point and that is, try to see the funny side, try to be optimistic that is most important. Do you know the very famous poem 'IF', try to read it, as it just may help you.

    If you would like a list of about 10 ailments, if you have about 4-5 (forget) then chances are you do indeed have Lupus. It is not a death sentence, it is a place to start your journey towards living a better life. Good luck Barbara

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