Struggling to get a diagnosis!

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I have been suffering with many symptoms that tick the Lupus box for some time now. I developed some neurological symptoms last December which have been investigated and nothing else has been detected which is a relief, in that year I have really struggled with the fatigue and moreso the severe muscle and joint pains, yet my inflammatory blood levels were 'normal', some days the pains in my thighs and upper arms are so bad it feels I have been in a car accident! Even getting sleep at nights is difficult as if I lie on one side in a few minutes the pain in that leg, hip, arm keeps me awake. Hands, wrists and fingers now are painful, like a widespread arthritic pain but like I said inflammation level were ok. I have a slight butterfly rash on one cheek only which flares up when the pains are at their worst, dr just said Rosacea and to use some steroid cream? The only blood tests that have come back 'inconclusive' were the ANA test and the Lupus Anticoagulation, which are being repeated soon, but gp just keeps saying I don't think it could be lupus! And I feel passed from pillar to post to neurologist and now she says perhaps an endocrinologist may be able to cast some light???? Anyone else been in the same boat regarding diagnosis? Feels like each day I have something new to contend with and each day getting more pain and limitations sad.

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16 Replies

  • Posted

    Hi. Ok. You don't need a neuro or an endo....they just don't diagnose this illness. And your gp can't. Where in the eorld are you? Are you UK based?

    I struggled for years for diagnosis (not Lupus but Behcet's). You would be better to see a rheumatologist or an immunologist.

    Let me know where you are based and I could perhaps suggest somewhere you could be seen where they know how to diagnose these conditions. X

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    • Posted

      I m in the UK.

      Thanks for replying, the only reason they sent me to neurology was I developed Horners Syndrome after a viral illness and so had to have ct, MRI and nerve/muscle conduction tests. I know it's nothing of a neuro cause because of the pains and fatigue. Today I ve woke up feeling like I ve been smashed in all my joints with a hammer and the muscles feel like I ran a marathon yesterday, so painful. sad

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  • Posted

    Hi kat66920

    It sounds as if you are presenting with symptoms of Polymialgia Rheumatica..PMR...this is diagnosed by an ESR test..Erythrocite Sedimentation Rate Test which it sounds as if your doc has had carried out.

    What is the pain like when you get up? Is it severe on getting up but then subsides a little while after but the pain remains but not as severe....

    I ask these because i was diagnosed with PMR...and rosecea....and i had the same symptoms as you are presenting and was diagnosed by a Rheumatologist who i still see for checkups as PMR can lead to Temporal Arteritis which affects the arteries in the temporal area of your head ...

    I do hope you get a diagnosis soon.....best wishes...

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    • Posted

      Thank you for your reply. I have to get up slow and stand for a few minutes before fully weight bearing on my feet and ankles as they get really painful but yes it is slightly better once up in the joints but the muscle pain and fatigue is there all the time and has like an exaggerated response to any exception, as in if I do lift something heavy it will feel painful for two days minimum??? Even to touch, It's really bizarre.

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  • Posted

    if the thought is lupus, then a rheumatologist is in order.

    I have a positive ANA and I do not have lupus...my point is that many diseases tick a box or two in common. It is rather like being a sluth...rarely is diagnosis a nice black and white box.

    Perhaps you will consider a diary...date, then morning noon night, symptoms, which joints, treatment your tried, specisl notes such as, I fell down two steps or it poured rain all day.

    Myself and others in our discussion group will be your support.

    hugs

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  • Posted

    if the thought is lupus, then a rheumatologist is in order.

    I have a positive ANA and I do not have lupus...my point is that many diseases tick a box or two in common. It is rather like being a sluth...rarely is diagnosis a nice black and white box.

    Perhaps you will consider a diary...date, then morning noon night, symptoms, which joints, treatment your tried, specisl notes such as, I fell down two steps or it poured rain all day.

    Myself and others in our discussion group will be your support.

    hugs

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    • Posted

      Thank you, yes I think a day to day diary is in order as I m sure my gp thinks I m making it up!!! Not the Horners Syndrome lol that's there for all to see, but in the absence of anything that states them in the face they just push a prescription for painkillers and steroid cream for the rash!!!

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    • Posted

      God they make me crazy with their resistance to referring people to the right places. 

      If I were you and I could do it I would circumnavigate the system and pay for a first consultation then get follow up on NHS. Brilliant guy in London Royal Free hospital. He is a neurologist so that contradicts what I said earlier. But he has a special interest in inflammatory disorders and that sets him apart. His name is Desmond Kidd and he does visiting consultations at other hospitals. He is an NHS doctor but he also does private. Would see you in a week and you would get follow up on NHS. Anyway, just a thought. I was so desperate for my dx in the past I paid to see someone. Sadly I paid for the wrong sort of consultant and waited another 3 years and in that time got worse and worse and worse until I had to give up work. 

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    • Posted

      I ll definitely look into seeing if I can see that consultant,would I have to be referred by my gp though? it would be worth it just to try and get answers, I m so limited at the moment because of how unpredictable the symptoms are.
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  • Posted

    Hi. I feel for you. I am glad the neuro tests have come out ok. Unfortunately this being passed from pillar to post happens quite a bit. You are not alone! Best thing to do is persevere I am afraid, but you do get alot of support on here. I am nearly four years down the line from SLE diagnosis but probably 6 maybe more years since my symptoms started. I hope you don't have lupus and it is something else that is more easily treatable, as it is difficult to get on the right treatment, I am still trying. Having said that, I know there are people who have successfully got on the right treatment and they are leading relatively normal lives. The fatigue can only really be sorted by pacing yourself ( easier said than done!) and not setting yourself unrealistic targets. My joint and muscle pains eventually settled by ALOT of stretching and then regular gentle stretches daily. If I stay in one position too long or do too much, I pay for it the next day and day after! I can't do proper yoga as my joints are a bit poor, but the principles of it are useful. I have flare ups which result in them giving me steroids for a short while, and I know some people have 4-6 monthly depomedrol/kenalog injections. A diary is a good idea as some foods/drink can make symptoms worse, so definitely do that. When I have a flare my skin goes crackers and I swell up and then dry up like a desert, shedding all over. I tried all the precription creams but found that a decent shea butter one is just as good and doesn't smell like a hospital. I have positive ANA and whatever else marker they use but even when I am swollen up, joints immovable and clearly poorly, my other inflammatory markers are normal. Just don't get too het up on the blood tests, try the stretches and diet approach (pineapple, cranberry juice and veg helps me, some people say turmeric is good as well) until the doctors decide what they want to do! Good luck

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  • Posted

    Hi kat66920

    Has your doc arrsnged a anti-dsDNA blood test this is the definitive test for lupus...if you have not had this test request your doc to arrange this test for you so you can be sure about what is going on with you......best wishes...

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    • Posted

      Hi, No apparently the test I had was the ANA test and alongside that the lupus Anticoagulant (which I know can be related to things other than lupus like antiphospholipid Syndrome etc). Apparently they both came back inconclusive and needed repeat testing in three months, which will be next week.
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