Help needed please

Hi, I haven't got a diagnosis of Lupus - I'm aged 51, of below average weight and have a 13 yrs old with special needs... I have a diagnosis of undiferentiated connective tissue disease. I'm ANA & Ro Postive. Am Vit B12 defficient, have raynauds, on Thyroxine, history of repeated miscarriage (obviously when younger!).

I'm on Hydroychloroquin 200mg a day since begining of June 2012.

Have not seen the same Doctor twice at the hospital - the Connective Tissue specialist nurse on my first visit with her, lunched into... "a lot of people WANT to have lupus" and I don't think you have... So I was already in one of her boxes...

On a follow up visit she said she thinks I have fybromyalgia as 2 weeks ago as I said all the symptoms are still there and the pain is still bad. The previous time I went another Doctor said I definately didn't have Fybromyalgia, and if the Hydroxychloroquin worked would look at increasing the dose to 400mg daily.

While I was there the nurse asked a Doctor to come in who didn't even look at me - he said if the pain was still there, stop taking the painkillers - plus " should expect to be tired at my age looking after a special needs child" - then he walked out.

The nurse did order more bloods, and the resluts have shown my CRP has come down to 5.6... so inflamation is shown as in the normal range now - I can follow all that. But they just don't listen to my other symptoms...

Which are:

I still have the pain, no evidence of joint/bone issues of swelling of the joints (xray shows) - but I hurt!

Mouth ulcers -

awful fatigue - unrelenting...

aching muscles and joints

swallowing problems (have had barium swallow which was all OK)

always cold (thyroid has been checked and iron levels)

nails are brittle flaky ridged and convexed, which is odd and getting worse

severe headaches

depressed (on citralopram 20mg)

I have a rash that comes up on my cheeks (but as its never been there on a visit they don't believe it - even though I showed a photo)

feverish at times for no reason

hair fall out lots (but as I have very thick long hair, the nurse said thats not a problem then!)

These symptons have been building up for quite a long time, years - and are slowley but surley getting worse...

Has anyone else had similar issues of not being listened to / understood by the hospital Doctors and Nurses???

I am a intelligent person and am feeling very frustrated by the system...

HeLp pLeAsE....

24 Replies

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  • Firstly can I just say big hugs to you!!

    Reading your post was like reading something I could have wrote myself!! I also feel I am listened too and not taken seriously! I wish I had some good advice but all I can say is to keep fighting for someone to listen and help you. That is all we can do. Good luck and take care xxx

  • Hi there, after reading your blog I realise how lucky I am! I have been diagnosed with Lupus and am being cared for by the greatest team of doctors I know. I am sure sure where abouts you are but I am looked after at the UCH in London and would suggest that if you are anywhere nearby you should try to get yourself down there (or at least referred). I have many of the same syptoms as yourself, including the dry and brittle nails which i am at the moment trying to get some answers for. (It would appear this is a symptom of Lupus but having been diagnosed for some 15 years) my nails have never been in such a bad state! Also my hair is fine and falls out occasionally. Please try to get a referral to a Lupus specialist - a simple blood test will determine if you have this awfu disease. Wishing you luck and best wishes.

  • Hi, I'm being seen in Leeds. I've had blood tests. They show I'm ANA & Ro Positive. they've not said anything else.

  • Oh my word, all of those symptoms and ANA Positive, etc. Is there anywhere else you can travel to see a practitioner?

  • Hi,

    Yes I think so - There's a Rheumy Unit at Dewsbury - I have also changed my GP (not that the old one wasn't good, but gone to a much smaller practice) - Plus trying to find out all I can. I'm really shocked by how little the hospital were willing to tell me about all MY results - I was a number, and clearly didn't need to know, understand or be listened to.

  • Have you got a lupus support group anywhere near you? Look up Lupus UK website, or contact them for details. Am wondering whether it would be helpful to take someone with you to your appointments who knows about lupus and can ask pertinent questions, push for correct responses, tests, etc.

    In fact, I think this is very good advice I should also take next time I go to see the rheumy!

  • My GP suggested joing a lupus support group due to my blood results.

    When I mentioned this to the connective tissue nurse at the hospital - she told me I shouldn't do that, as I would read alsorts of things and would convince myself I had Lupus - and she didn't think I had. (there was apersonality clash here).

    My instincts tell me that I'm getting worse.

    Eventually I though I need to help myself here - so found this site which had been fab. And your idea of an informed knowledgeable person going with you is really good. I'll have a look around - have 3 months to find someone.

    ThAnKs

    x

  • Also, I'm wondering whether I did right to get referred to Dr Nurhan Sutcliffe at Mile End, even though she has a special interest in Sjogrens and Lupus. I'm hearing/reading good things about UCH and wonder if I should battle (sigh!) to get my referral changed. Anyone in particular there especially helpful?

  • It seems to be a lupus lottery! I was very lucky and was diagnosed on my second visit with my rheumatologist. I wrote a diary and a long list of symptoms. I took my partner with me and he did a lot of the talking, because I was way to exhausted to even speak. Don't give up. Xxx

  • Thank you...

    Instincts told me to keep a diary - so I started it after my last appointment.

    The CT nurse very clearly told me that as I showed not sign of joint damage on xrays, or visible evidence (swelling etc) and that my blood CRP was 5.6 (had been much higher before) then it must be fybromyalgia. On the previous visit I had been clearly told by the Consultant it was NOT fybromyalgia.

    The nurse also said when she ordered the bloods that I probably wouldn't still be ANA and Ro positive, it had probably changed... It hadn't - exactly the same...

    I had tried to tell her I had just finished steroid prescribed by my GP, but she wasn't interested. I wondered if that would have altered my CRP results - she wasn't interested.

    It's like a lottery, who you get to see, or who listens to you.

    X

  • I thought I would down load this off the Lupus Foundation of America for you - it may have some relevance:

    "Antibodies to Ro/SS-A and La/SS-B (Ro and La are the names of proteins in the cell nucleus) are often found in people with Sjögren’s syndrome. Anti-Ro antibodies in particular will be found in people with a form of cutaneous (skin) lupus which causes a rash that is very sun-sensitive".

  • Hi certainly the waiting is very frustrating. What I find annoying is that who really does want a label of lupus....none of us is the likely response. I can imagine that most of us had never heard of it until it was mentioned to us in response to symptoms. My first rheumy that I saw privately for the first consultation stated that he would put money on it being lupus, GP saying lupus and other doctor in the practice....just rheumy saying UCTD. I think the unknowing causes doubt at times even when we have all the symptoms.

  • HUGE HUGS & APOLOGIES FOR CAPS BUT HAVE VISION PROBLEMS AT THE MOMENT

    I HAD ALL THE SAME PROLEMS. EVEN LOST 4 BABIES AT AROUND 22 WEEKS & A STILL VIRTH AT 34 DURING THE 80'S. IT WAS ONLY IN 2008 I FINALLY GOT DIAGNOSED AT THE LUPUS CLINIC IN 2008.

    MY BEST SUGGESTION IS TO PURCHASE SOME OF THE MAYERIALS AVAILABLE VIA THE LUPUS UK BROCHURE FOR 2012 - 2013. THESE BOOKS ETC ARE NOT EXPENSIVR AND HAVING GIVEN MY GP A COPY & LOCAL CONDULTANTS A COPY IT HAS BEEN LIKE A LIGHTBULB HAS SWITCHED ON.

    EVEN WITH GREAT SUPPORT IT IS STILL I AM AFRAID A FIGHT. NOT EASY WHEN YOU LOOK HEALTHY. TYPICALLY WE ALWAYS TRY AND LOOK OUR BEST WHEN WE GO OUT OR TO APPOINTMENTS. IF YOU ARE SO EXHAUSTED TRY AVOID USING UP THAT ENERGY YOU NEED FOR YOUR APPOINTMENT. IF NEED BE TURN UP IN PJ'S WITH A NICE COAT ON. HATS COVER UNWASHED HAIR.

    PLEASE TAKE A LIST OF QUESTIONS. SO OFTEN I HAD FORGOTTEN TO ASK ABOUT SOMETHING.

    IN DEFENSE OF THE DR'S THEY ARE SWAMPED. SO IF YOU HAVE PREPARED QUESTIONS AND REQUEST HE GOES THRU THEM WITH YOU TO AVOID WASTING TIME HE/SHE MSY APPRECIATE THE FACT. ALSO HAVE A " SILENT " FRIEND WITH YOU WHI CAN TAKE NOYES. IT IS UNFAIR TO THE DR TO BE INTERUPTED AND YOU WANT THEM TO LISTEN TO YOU. AS YOU ARE THE ONE SPEAKING AND DEALING WITH ALL THE AWFUL SYMPTOMS.

    I AM SURE MY SUGGESTIONS ARE NENTIONED ALL OVER THIS GREAT SITE. BUT PERSONALLY THESE TACTICS HAVE HELPED ME PERSONALLY.

    I SO FEEL FIR YOU. BUT THANKFULLY WE HAVE THIS GREAT SUPPORT SITE. I WISH I HAD COME ACCROSS IT EARLIER.

    HUGS AGAIN. TRY AND KEEP YOUR CHIN UP.

    FIONA

  • Hi Thanks,

    Some really good ideas - I lost 5 babies before I had my son at 27 weeks...

    I will look at the material available - I can really see now that I have to be pro-active with this, not re-active... Not easy when you feel pants most of the time...

    X

  • hi adamine I also feel as if i could have written your post i was finally diagnosed 7 years ago with ucdt . back at rheumy doc last week (different doc) only to be told my blood results were unremarkable so took me off anti inflam tablets ans reduce my plaqueinil from 2 a day to 1 a day mon - fri . RESULT at gp a week later in severe pain and crying i am being referred to a different clinic the rheumy docs last words to me were i think all i will be treating you for is chillblains . I ve lost my home and job through this illness it just felt like a slap on the face . You are not alone in this try to keep strong and keep fighting . So sorry for the rant but i am sure under the right guidance you will get an improvement in your symptoms . Take care .x x

  • Dear God in Heaven. I feel so sorry for you. These people really need to stand back and hear and feel what they are saying to us people.

    Rant away - you should be able to - it's appauling to hear all these stories. It's like the Doctors/hospital only want to hear about the extreme/severe cases - but all our symptoms have a major impact out our lives. I've not worked for a year, but am luck I can get by.

    I feel reassured by all the posts - but scared by professional and ignorance and lack of understanding. Scarey... X

  • Hi Adamine, I was diagnosed with Lupus SLE in 2006 and then it changed to Mixed Connective tissue disease in 2007 when I discovered I was having problems breathing as the lupus was now attacking my lungs, I still only say I have lupus as MCTD is an overlapping clinical features of SLE and I have Raynaud's, Sjogrens and many more symptoms.

    My Rheumy and the nurses are all brilliant.

    I hope you and skye will soon get sorted with the right consultant and nurses.

  • Hello There'

    Firstly, nobody actually want lupus, but if you have to live like this then having a name for it all is not a lot to ask for.

    It took me 15 years to get a lupus diagnosis, which was quickly modified, But a name was liberating and empowering,

  • Hi,

    When you say modified... what do you mean???

    kx

  • Hello Adamine - When you see that nurse again, if you do, maybe you could pluck up the courage to ask her, from some of us who have had lupus for years, WHY she thinks ANYONE would WANT to have lupus?

    This is a hideous disease, that slowly (or quickly) wrecks people's lives. I wouldn't wish it on my worst enemy and would certainly far rather I hadn't got it.

    I saw my GP only this morning to discuss some issues I have with my current drug regime (No Sleep!!) - and her comment was that this is a horrible horrible thing to be stuck with.

    I wish you luck in your search for a proper diagnosis, which I hope turns out not to be lupus - (but if it is, know that you will find ways to cope, we all do).

  • who in god name wants to have lupus. its painfull, disabilitating and you get no sympathy as people think you are faking and want to get benefits. there is a lot of politics surrounding lupus and its diagnosis. my gp laughed in my face when she read my notes fom my rheumy saying that i was positive for sle.

    doctors in paticular gp's need to get thier act together to support people not make them feel worse for having an unfashionable diesease with no cure

  • Well said!! I was misdiagnosed from the age of 17-40. They file it in the "too hard' basket. Back to Med School and learn the basics, I think!

  • Firstly ,a late response i know ,but ive only just joined the lupus blog ,this is new to me,After suffering for 16yrs and with my will to find an answer,they came up with lupus ,with overlap ,sjogrens,fibromyalgia.I too was told by a different rheumy,that i had mixed connective tissue disease ,i then go on to find out its lupus ,given my precise symptoms and symptom history,my ANA was low in titre but still in the positive range ,CRP goes up and down ,its 7 at the moment,in terms of a label........it can help with explaining yourself to others,however i agree who on earth would want to be labeld with lupus if they didnt have it????CTD or MCDT or UDCTD or LUPUS ,the treatment plan is pretty much the same for all,some consultants even call it pre-clinical lupus or zero negative lupus ,when your blood markers never meet the text book requirements for a lupus label,however it can seem very obvious it is lupus ,were all different and there is a minority of people who dont classically fit the text book markers.I was a fence sitter for 16yrs ,with an array of flares always brought on by the same things ,looking back for me i was 20yrs when this evidently started im 38yrs now ,with a definate worsening of all symptoms with little respite between flares ,its more like a permenant flare but with peaks also ,this is because i try to fight to hard and am learning the hard way,however i feel like at least i am learning.You know your own body it sounds to me like the treatment your having would be for lupus,so why not take it as lupus ?if it makes things a little easier.Follow your heart ,take your meds if you know they are helping? and for me i know trying things outside the box helps,like holistic therapy and conventional meds together,Diet change ,mind set change ,and even consider meditation or some kind of relaxation class ,as these can help the body repair from deep within ,hope this may help ??keep well and positive mental attitude always even if it hard to apply ,take care ,brave ;)))

  • Hi Brave,

    Many thanks for this messgage, it had really helped my spirits... Looking back I've had this for years... I have now changed GP... and am going to tackle the "possible" move to a different consultant. I now realise that I have to look after myself. There are somany people out there having the same issues - it's good to know I not loosing the plot...

    HuGs x

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