Getting Diagnosed

Hello everyone! I'm new here and wanted to ask how long it took you folks to get a diagnosis or are some still not?

I have a rheumatologist appointment next week so don't know what to expect for a first appointment? The doctor had referred me as I had been back and fourth for over a year to see her with numerous symptoms and she always thought it was to do with my thyroid as I had been diagnosed with graves in 2015 but since then it now seems to be borderline underactive, however I felt it was something more as my muscles ached some days finding it hard to get up the stairs even felt like passing out at times with constant panic attacks. This seemed to have periods where I was fine then it came back again and could never figure out why as I've scrutinised everything from diet to exercise!

I have had reflux for years but now it's so bad it never lets up, now feeling like I'm 6 months pregnant with constant stomach pain with pressure like I need to wee all the time, I'm at my lowest ebb along with left hand carpel tunnel of which I hope to get the key hole surgery.

Anyway I have had 2 positive Ana antibody tests and the doctor thinks it may be lupus?

Does anyone have carpel tunnel and lupus? and how long after being diagnosed did you begin treatment and did symptoms improve for you?

Thanks and any info is greatly appreciated!

18 Replies

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  • It took me 7.5 years to get diagnosed with lupus.

  • Hi Nikki246, that's quite some time, others are saying they have been medicated without a diagnosis so was this the case for you? I mean you have not gone 7.5 years untreated?

  • 7.5 years with no treatment. ☹️ Doctor kept saying there was nothing wrong with me! It was only when I moved house and surgery's and got a very good junior doctor that I finally got some help.

  • Hello hunnybuns (love your name 😊)

    I'm 63 and was diagnosed quickly as an infant in the states. My mother & doctors kept the diagnosis secret (long story) while I was still living at home and in their care. I just thought I was more poorly than other kids. So when I moved to the uk at 21, the NHS took over my care unaware I'd been diagnosed with lupus all those years ago

    The NHS went on to care for me, diagnosing & treating lots of secondary immune dysfunction related conditions and saving my life in emergencies for nearly 40 years...but never spotting the lupus underlying almost all my health issues

    By my early 50s, the cumulative multisystem debilitation, caused by lack of daily systemic Lupus meds for decades, was so obvious that I was referred to a brilliant lupus expert rheumatologist who figured my lupus out based on history & physical exam and started the treatment process right away. My blood results proved her right: these meet official immunologic diagnostic criteria, although I'm seroneg.

    I'm now 6 years into the refinement of my diagnoses generally, and feeling less pain + more stamina & resilience than I have since my early 20s...all thanks to conscientious lifestyle management + my daily combined therapy oral lupus meds + great treatment plans from all my multisystem clinics including immunology

    So, my story shows that the diagnosis process can be very quick, but it can also be very slow πŸ˜‰. Each case is different. And this process goes best when there is plenty of open communication between patient & consultant...cause diagnosis is a collaboration. The Lupus UK website features really good publications on this subject & all aspects of lupus:

    lupusuk.org.uk/publications/

    Hope you'll let us know how you get on

    Wishing you every best wish

    πŸ€πŸ€πŸ€πŸ€ coco

  • Thanks coco, well you have truly been through the mill haven't you! I have not heard of seroneg? gloomy Eeyore mentioned it, I take I it is all the symptoms without the positive blood results? Did you feel unwell all the time or have you had periods of remission? Its daunting to hear that its life long but as long as its managed, do you do anything particular to feel as well as possible? exercise etc.

    Thanks l will look at the link and of course let you know how I get on.

    Vanessa x

  • Good question, Vanessa! Here is what wiki says about autoimmune disease serostatus: "Researchers have investigated the effects of autoantibody serostatus on autoimmune disease presentation. Study of seronegative patient populations has led to the identification of additional autoantibodies that could potentially help with diagnosis."

    Official immunologic & clinical criteria for diagnosing lupus include various types of seropositive blood results, as well as other significant types of blood result. So, some patients, including me, are seroneg at the time the treatment & diagnosis process begins, but do satisfy enough details of other immunologic diagnostic criteria.

    Here's a link to a popular discussion on diagnostic criteria here last year:

    healthunlocked.com/lupusuk/...

    πŸ€— I could go on for many inches in reply to your ? about lifestyle management....instead I'll just say: it's been crucial throughout my life! Diet, exercise, meditation, pacing activities etc are as important to me even now lupus meds are helping me so much

    As to replapsing & remitting lupus: in my case this has been a relative matter! I've never had a day in my life unaffected & influenced by my immune dysfunction & connective tissue disorder. But there have been phases of life when signs and symptoms tended to be somewhat less severe. But, because the damage gone by untreated autoimmunity is cumulative, the longer I went without daily systemic meds, the greater my multisystem damage & dysfunction became. So, with age, everything got a lot worse generally all the time. The great thing now is that my daily lupus meds give me the stamina, relisience & freedom from pain needed to cope relatively happily with my cumulative degeneration.

    Hope something in there helps...yes aspects of life with immune dysfunction are daunting, but, like do many things in life, once you get "stuck in" you develop coping strategies & tactics...these become second nature...as your expertise grows, things become less daunting πŸ˜‰

    πŸ€πŸ€πŸ€πŸ€ coco

  • I have been seeing a rheumatologist for nearly three years but as yet am undiagnosed. My symptoms all point to lupus - joint pain, exhaustion, face rash etc. But my bloods keep coming back negative. The rheumatologist I was seeing believes in seronegative lupus but wouldn't commit to a diagnosis. Did prescribe Hydroxychloroquine which has helped a lot of symptoms but not all. He retired at the end of October so I don't know who will replace him. I just hope it is someone as nice and as forward thinking as he was.

  • I would not worry so much about a specific diagnosis as much as being diagnosed with "autoimmune dysfunction" or disorder. This should help you get to the right meds since most use the same treatment. The positive ANA does indicate that something is going on w autoimmune.

  • Totally agree, I was fixated on the diagnosis but my Rhuemy told me that it doesn't matter what it's called. It's all about treating the symptoms that you have at that time and helping you feel better! For now I've been given a temporary diagnosis of Undiffferentiated Connective Tissue Disease, if people ask I tell them it's lupus because that's what I have the symptoms of and it's just easier to say!

  • A locum gp sent me for blood tests in 2005 after the resident gp had been treating me for RA without a proper diagnosis. He marked the appointment request as urgent and I was seen in 2 weeks, then back within a week (I think) for the result of mild SLE and onto the correct treatment straight away. I go yearly now for bloods etc...

    Had carpel tunnel surgery just last year. Once I agreed to have it done I had a wait of several weeks. Went in as a day patient at 7 30am and was home before 11am. I need the other hand doing ....not arranged anything yet. The surgeon asked me when would be convenient - "when can I book you in for the other hand?" before I left theatre. I said I'd let her know

    Having had one hand done I can say without any doubt its much improved, the painful pins and needles and numbness have gone and I can hold things comfortably again. I'm not woken in the night because of the pain so its well worth doing. Just need to pluck up courage to get the other one done as I went on my own and struggled so am a bit reluctant to go again

    The SLE is under control and has been since taking hydroxychloroquine, am very thankful to the locum that got me an app so quickly. I've felt such a lot better. I was having breathing problems, since been diagnosed with asthma, on 3 different sprays now....muscle aches, joint pain, hair loss, dry mouth, sensitivity to cold and bright lights, awful night sweats and generally feeling unwell..so so tired all the time. Much better now though :) Not curable but well controlled by the hospital

  • Glad your feeling better! I hope this is going to be me too soon, did you find driving tricky at times? I find when I drive I get even more tired like I can't see properly and start squinting and have had to pull over and close my eyes to give my brain a chance to catch up!

  • I dont drive hb, never learned so cant answer that one

  • ok chrisj

  • 2 months. Was feeling fatigued, had routine surgery, was hospitalized for 10 days during which time I was diagnose SLE nephritis

  • It took 3 months for me to get a referral to a Rheumatologist and another 3 months to get the diagnosis of seronegative RA. Full on treatment for RA began at that time. Then 2 1/2 years later, my ANA was strongly positive and my diagnosis changed to possibly lupus, MCTD or something else. All other tests came back negative so I am currently in limbo with some sort of autoimmune, connective tissue disease. It seems to be a very fluid process, but I am doing well on Etanarcept, so my treatment and symptoms are stable. When I pushed for a definite diagnosis, my doc decided that I had Fibromyalgia, and then charted that I also had IBS, TMJ, depression, migraines, yada yada--ALL LIES! I changed doctors and am now going with the flow. As long as my AI disease is under control, I will just be happy. Some kind of connective tissue disease is a satisfactory diagnosis for me at this point!

  • Hi, thanks for the detailed reply, I'm glad to hear you have symptoms under control and I suppose that is all that matters even without a diagnosis! That is all I wish for I've have also waited 3 months for a referral as apparently for some reason Rheumatology had some set backs in Durham. Too right change doctors fancy making it up what a joke! I just want to start feeling better to have some energy for my kids, to top it all off I've got thread worms which have had for months and cant get rid of them so wanted to have done so bye the time I get medicated as apparently corticosteroids make them impossible to get rid of! uggh!

  • Hi hunnybuns79,

    Good luck with your rheumatology appointment. I hope that it goes well. We have a blog article about getting the most from medical appointments which you may find helpful - lupusuk.org.uk/getting-the-...

    Let us know how you get on.

    If you need more information about lupus and how it is diagnosed, we have a free pack which you can request and download from our website at lupusuk.org.uk/request-info...

  • HI hunnybuns79, I had both hands operated on last year due to carpal tunnel and have just also been diagnosed with lupus. I have had problems with painful joints for years, but last year I developed a rash that 12 months on was biopsied and was lupus. My bloods also confirmed diagnosis. It took a year of going back and fore to doctors with cognitive difficulties , migraines, multiple myalgia, sore joints, dry eyes , hair thinning etc etc etc. I was also diagnosed with sjogrens. I am currently awaiting an MRI scan after seeing neurologist too. I was stated on hydroxychloroquine in December but so far its not helped , making me nauseated. It can take months though before it starts to help apparently. I wish you well and hope you get some answers / treatment, the waiting game is so frustrating but all too common!

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