rhuemy app !!!

Well just got back from app .

I showed him photos of my red face and across my nose .,had my 4th positive ANA and symptoms.

He said he can diagnose Connective Tissue Disease but one difinitative bloods for lupus has always been negative and he is waiting for the results of my recent one . Dont think he wants to diagnose Lupus unless this blood test is positive!!!????

I'll ring him in 2 weeks to find out !

Still on hydroxychloriquine as when i stopped them i got more ill !

16 Replies

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  • Larissa - if you do have lupus - it can take ages to get a diagnosis, so don't despair. I know that for you, knowing what it is and being able to give a name to it, would help. But maybe, just maybe, it isn't lupus, and until there is a diagnosis, we can all cross our fingers for that.

    Take care.

  • Oops meant to write 'diagnosis' and not 'referral'.

  • Do you go to York Hospital? That's where I go for my lupus! It did only take me 2 weeks to be diagnosed though but I was seriously ill at the time with major organ involvement!

    Xxx

  • I wasn't quite as serious as end stage organ damage but my kidneys were doing bad things! I guess they try and err on the side of caution with diagnosing when it's not immediately serious/life threatening.

    I passed out one day and was admitted to a&e. They thought i was just dehydrated but then my blood tests came back pretty bad. My kidneys were leaking A LOT of protein, my potassium sky rocketed and I had very positive Anti-dsDNA amongst other things. I had a kidney biopsy and I was actually diagnosed within a week.. I was just in for 2 in total for observation.. It's been a pretty tough 18 months and I've been through 2 lots of meds now. Just started cyclophosphamide which seems to be doing the job so fingers crossed!

    Is it just mainly your joints that are affected then?

    Xx

  • Hi, that's a lot of symptoms! I'm pretty lucky in the sense that most of the time it's on an internal level and i don't really get any physical effects if that makes sense? It's like extreme's.. i'll feel fine most of the time but as soon as i start to flare everything will deteriorate really fast and i'll be in hospital for at least a week when all the pain, fatigue etc. will kick in all at once and will persist till it's under control again. Yeah, the anti dna and complement are good indicators of lupus though people can have lupus and not have positive levels!

    I really like the Doctors at York, i've met dozens of Doctors from across various departments and they're always really friendly and helpful. Can i ask you which rheumy you see? I don't see one currently but will probably have to at some point in the future.. xxx

  • hi larrisa

    i too have question marks where lupus diagnosis is concerned, but my rhumey is keeping a close eye on me which is good but a nightmare at the same time.

    im always very relieved when my bloods show normal imflamation as i desperately don t want lupus its a very serious disease to live with and the symptoms are difficult to deal with even when your told its mild.

    however now being diagnosed with sjogrens it looks quite likely that lupus will once again be considered,i know its frustrating but try to carry on and not worry too much.

  • He REALLY doesn't want 2 give u that diagnosis does he? The bloods r not a definite indicator of lupus (he should bloodywell know that!), merely a tool 2 HELP with the diagnosis. 4 positive ANA's , what more does he want?! Do u know which blood test he's waiting on?

  • thankyou everyone

    I feel ok, This is the first time he has even told me i have connective tissue disease so i suppose i know a little bit more ! wether its Lupus or not i'll just have to wait and see.

    I still think i have lupus but i hope i am proven wrong ! I was recently given a name of a rhuemy who specialises in Lupus so may ask gp to be reffered for a second opinion .

    I am already taking hydroxy so i know i am getting some treatment so not worried but would just like to know . Sorry dont know what blood the blood test is but am gonna ask when i ring x

  • Well, funny, lupus is in itself a connective tissue disease, I would go to a lupus specialist for a second opinion. Not that anyone wishes to have lupus but knowing what one has, helps rationalise the pain sometimes and works towards a more targeted treatment. Well done for today, you must be exhausted.

  • yes i am bloody tired ! i am going to see my gp and ask to be reffered i think x

  • Hi Larrisa

    I am not sure where u live. But u could ask for a referral to St Thomas in London. I am one of the lucky ones as my gp works with our local lupus rhumie in chichester so I after a year of being in a flare I was referred to him, again I was lucky as I had private health care so I got to see him within a week rather than the usual 6 weeks. But 2 positive ANA and my symptoms have led to a diagnosis, I am lucky that it's mild and doing early so we can manage it. I even have a treatment plan for the next 2 year's subject to changes as we need to. I consider myself lucky. Just keep fighting and asking! Good luck

  • some drs are just plain obstructive. my gp told me that i definately did not have lupus. even after ticking nearly eavery single box and the senior rheumy at my hospital diagnosed it. by the way i dont get the face rash or hair loss. but all bloods oint to it. in fact i was diagnosed within weeks by accident as i saw anather gp. sometimes a group parctice is a good thing.

    anather note pray its not lupus. there is no cure and the meds are cruel. i would do anything not to have it. its the very worse thing that has ever happened to me....ever!

  • I ended up with a diagnosis of Mixed Connective Tissue disease rather than Lupus but it's very similar really - still on hydroxy. Less danger of kidney involvement (yay!) more danger of heart involvement (boo!) so just different checks really.

    At least you are on the hydroxy which would be the first thing they'd try for Lupus as well really so the label isn't so crucial. I describe myself as having an illness in the Lupus family to people initially. They've usually heard of it from House....

    Good luck,

    Jennie

  • Hi Larissa, sounds like a really good idea to get referred to a lupus specialist for a 2nd opinion. They understand the subtleties of this illness better than general rheumatologists. My lupus was diagnosed by a dermatologist, even though I had been seeing a rheumatologist regularly for years. What we need is a lupus Poirot (substitute your favorite TV detective) working for each of us. Very best wishes. X

  • Lupus Poirot? looool! Can I have an arse-kicking Lupus Clint Eastwood instead? Or maybe 'Buffy the Lupus Slayer'? ;0)

  • i'll keep you all posted ! very good advice, thankyou x

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