change in diagnosis and a bit confused: After... - LUPUS UK


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change in diagnosis and a bit confused

mirren profile image

After having a sudden onset ? Pericarditis in January, which resloved after about 8 weeks on Naproxen, I developed sudden onset symmetrical Inflammatory arthritis in May. Was being treated as suspected Psoriatic Arthritis due to family hx and Neg Rh Factor, with MTX - some aspects ie fatigue etc have improved others have got steadily worse... had appt at Rheum nurse today, really listened about my neck and back pain, hearing loss, no 'morning stiffness' as such but pain and weakness in hands and arms increasing over day, severe burning and pain in feet and ankles and decreased exercise tolerance.....

She sent me for neck xray and went to speak to Dr - they went through all my old results and found Pos ANA from 2003 - so Dx changed to provisional Mixed Connective Tissue Disorder.

Adding Hydroxychloroqhine and 20 mg prednisolone reducing regime......

Gutted about starting oral steroids (gained 2 stone since May as it is ) - stunned about change of Dx and scrambling around trying to find out what it means. Had to come back to work and smile and carry on as normal but a bit shaken up to be honest.

7 Replies

Sometimes it takes a long time for an autoimmune disease to "show itself." I have had this thing for going on forty years, and they are still arguing about what exactly I have. I think we all have our own disease. After awhile they tend to be more like one thing than another thing. It takes a lot of patience just to go through the process of getting a proper diagnosis.

mirren profile image
mirren in reply to AnnNY

Thanks for response - its so frustrating not knowing what's happening to your body - who would be a rheumatologist eh?

in reply to mirren

Hi to you on here Mirren. I'm sure others with MCTD will respond soon but it's more rare than RA or PsA so there are fewer who can understand and relate than on the RA community so it can take a day or two. You are really not alone with this. I think many of us here reach the stage where we are sceptical of any diagnosis in case our symptoms shift course or the diagnostic criteria alter. MCTD can encompass so many symptoms that it's basically the ultimate multisystem autoimmune disease - apart from AIDS. I think I would be relieved if I had this or any positive diagnosis apart from mild RA you know - that's how low down I've sunk!

This morning I had an appt to see a different GP in my new practice. He turned out to be a senior partner and asked me if I would be prepared to see a final year medical student and he would come in after the appt and run through her findings and prescribe any meds I needed. I only went in to ask for some more sleeping pills and 1mg Prednisolone!

So 45 mins later this posh, cool young lass with pearls had morphed into a nervous wreck! She couldn't find my pulse, found my BP high-ish despite ten days of a BP med, had read of sepsis, IV Gentamicin, CRP of 160, chest infection, RA, Hypothyroidism, high LFTs, paired Oligloclonal bands blah blah. I tentatively mentioned that I've been having heart palpitations and my gums are sore and tight - which makes me anxious and my chest then feels tight and she swept her well groomed blond hair into a Mohican! finally her teacher, the senior doctor God, arrived and seemed delighted at how flummoxed my case had made her. He said "as I too have read, this lady has had many experts baffled - we are just GPs so there's no likelihood that we will be able to work out what's happening to her mouth or any other parts of her if they can't!"

And he then handed me a card and told me to attend a walk in ECG clinic at them large hospital where my rheumy works - some 40 mins drive away. I told him I've had loads of ECGs and all just show ectopic beats. He said "well you've tried every drug we can offer you already so all we can do is keep making sure nothing acute is taking place" and he opened the door and ushered me out. As I left I heard him say "never tell a patient you can't feel their pulse my dear!"

I'm sure you can guess what the ECG showed - ectopic beats surprise surprise!


mirren profile image
mirren in reply to

Lol, she must have been doing his nut in and he thought he would show her!! When are you at new rheumy next? Glad your ECG was 'ok' XXX talk soon xxx

in reply to mirren

I'm seeing him again on my 53rd birthday - Jan 7th.

Still waiting for his letter to arrive five weeks on - but he did say it takes 6-7 weeks for hospital secretaries to type and send. He re-tested all my autoantibodies so they can take a while to come though too. I'm pretty sure all will be negative/ equivocal again as my blood is usually determined to make a fool of me. Then I'm guessing he will say "wait and see" and hedge like my last rheumy did. Best to expect this - anything else would be a pleasant surprise because my symptoms are so unpleasant that I would welcome any explanation for them at all. As I say I've sunk to base on the "give me a name for all this" now! MCTD or UCTD would be fine - in fact I would probably go out for lunch to celebrate! I have accepted that I'm just gong to have to put up with all these nuisance symptoms now because I'm so drug intolerant that no doctor will risk giving me anything apart from anti depressants and statins - both of which I've rejected outiright. Doctors can only really offer drugs and I will only take these if I feel I need them and they will modify rather than pacify.

Methotrexate and Hydroxy saw off the RA side of things after two years. So wait and see isn't such a problem - but wait and see with a name would be so much better for my mind to process if you know what i mean?!

You'll do much better for having this diagnosis than for having none once the initial shock wears off. Although it's quite a mouthful so finding a simple way of explaining it to colleagues and family might help? X

This week they put a new Russian GP in with me. I think he thought he could to hypnotize me out of pain. On the way out I saw the chief dr and told him, "You better check on your Russian Doctor, "I may have put him into a coma." I saw I had driven him to Wikipedia.

Hi Mirren

Sorry your having a tough, confusing time over diagnosis.

A piece of info that might help you is that to be diagnosed with MCTD a particular antibody called antiRNP must be present in your blood. I see you mention it as a provisional diagnosis so it still could change . Having ANA show isn't specific enough for many of these illnesses but means there is something wrong with your immune system that needs keeping watch over for new symptoms. It can be a long tough road to diagnosis that can keep changing but I hope you have benefit from the drugs soon. X

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