2 docs say lupus Rheumy says not ....

[Tinalou]

This is such a rubbish situation to be in the Rheumy originally said MCTD and now he says he has done the lupus test and I don't have it! Prior to this my GP said there isn't a specific lupus test. She has also said they may never find out what's wrong. I'm confused IS there a specific lupus test? I am positive on the one that can be 5% not got it. But I have also had full bloods done that indicate lupus or bone marrow . When I first saw the Rheumy he got out a patient booklet to look up lupus (the ARC booklet) which didn't leave me encouraged and also he is as deaf as a post and as old as the ark lol. What should I do next as he has discharged me without telling me he had and referred me to pain management lol

[Hidden]

Well..i had tests which said i had positive antibody d which meant i had lupus.

[nanny4 in reply to Hidden]

My daughter is being treated for systemic lupus,BUT ! now it is thought that she doesn't actually have it at all.

She has gone from being told there's nothing wrong! To you may have multiple sclerosis, to it IS lupus! To it may be multi system vasculitis,to no! It may be discoid lupus and ms,now it is thought she possibly could have god only knows what,maybe vasculitis and skin allergy.

She is on loads of meds ,she has no lupus antibodies in her blood,a consultant at the lupus hospital I'm London took a look at her case and said what a mess has been made,but he doesn't think she has lupus,but he agrees she is severley unwell.

I know this won't help,sorry, but had to let you know.

Take care ,Sandy.

[Blueberry in reply to nanny4]

Nanny - this feels SO familiar right now except the med part. Good luck xxx

[Looby in reply to nanny4]

Nanny4 - lots of us will empathise with this!

I am really depressed at present because, apart from my husband's TLC, I don't really feel confident that the medical profession knows very much about this "syndrome" of multi-symptoms, and does little except experiment with various cocktails of drugs - a "suck-it-and-see" method of treatment. In America, they seem so much more "clued up" and sympathetic.

Do you think we should lobby Parliament on this issue?

[Samx]

dsDNA antibodies are very specific for Lupus, being positive for these is probably the closest thing to a Lupus test. There are other antibodies and also the fact that some people are diagnosed without actually having any antibodies, so it is very confusing! Having a strongly positive dsDNA test is mostly associated with severe lupus involving the kidneys. I originally got told i had MCTD because i had loads of antibodies show up but he had not done the dsDNA test so when he did this test he changed it to Lupus, i have been diagnosed with lupus nephritis recently too. As far as i'm aware it is easy for them to give a definite diagnosis of lupus if you have very high specific antibodies, certain symptoms and organ involvement but a lot harder for them to decide whether you do or don't have lupus based on certain blood results and symptoms alone. Hope this helps, i am obviously no expert but know a lot about the antibodies associated with lupus as i did my final year dissertation on them at uni. It's a very confusing illness with mild, moderate and severe variants making it more confusing!!

[Tinalou]

Thank you all for your replies it is such a cuffufall lol I need to get them to rule out MS as they have thought that for a while too x

[mummyswift]

Hi, can i ask nanny4 do U go to rlhim and see a dr Fisher. I have been referred to him since the whole of merseyside couldnt work out what was wrong. I been seeing dr Fisher for over year now, he is excellent, all his meds are homeopathic and i use conventional meds as and when needed, thanks.

[Blueberry in reply to mummyswift]

Aaaaaargh I'm in Merseyside too and similar experience. Although not resolved it / got to a diagnosis yet

[nanny4 in reply to mummyswift]

No we live in Buckinghamshire area,I have spoken to someone who runs vasculitis UK,he has been really helpful,told me to see if my daughter can get a referral to Addenbrookes hospital,as the have a lupus and vasculitis clinic,our main hospital doesn't.Sandy.

[Blueberry]

As for MS - I've been reading up on it and that's really hard to rule out too! Not only might there not be protiens etc in your spinal fluid (if they do lumbar puncture) but there might not be any lesions present in your brain at the time of MRI either - it can take years and years to be diagnosed with MS they're both really difficult conditions, and most medical professionals seem REALLY keen to steer patients away from a diagnosis.

My GP recently took a 3 page list of my symptoms (which mainly point to MS, although a lot cross over with Lupus) and tried to tell me every single one was unconnected - even the sun allergy - just stand alone. Everything

Keep fighting. Keep noisy. Try everything you can!

[nanny4 in reply to Blueberry]

Hi Bluberry ,I agree with everything you say about the Ms ,my daughter is having regular brain spine and heart and kidney scans,as they know she didn't have damage a couple of years ago,so it is all new scarring,none on the brain or spinal cord,but swelling on both,no explanation given,steroid infusions took swelling down.

I always tell het not to sit back and wait for people to ring her from the hospital,It's not there body suffering damage.

Hope all goes well for you,Sandy.