Hi. Iv been told last week I have lupus, fibromyalgia and Sjögren's syndrome. I also have poly cystic ovary syndrome.

[Mrsoliver]

I'm struggling with the new diagnosis as I had a positive ANA test but negative lupus test. Yet the rheumatologist still says its lupus and has prescribed hydroxychloroquine. Has anyone else had similar experience? Feeling lost

[Purpletop]

There isn't a positive lupus test, there is a lupus antibody test but that, confusingly, has nothing to do with testing for lupus but for Hughes' syndrome (good news that you've got it negative). A positive ANA helps in the diagnosis of lupus but usually your symptoms play a major role. Rheumatologists generally are reluctant to diagnose lupus unless there is overwhelming evidence that a person has it - indeed you'll see many on this site who had to go with their symptoms unrecognised for years because this reluctance. I suspect that your rheumatologist had his/her reasons to diagnose lupus in your case but he/she should have made it clear to you why, so that you don't worry you've got the wrong diagnosis. Still, if you're unhappy about it, you'll need to go back and speak to him/her about it - hopefully he/she will be able to satisfy you about their diagnosis.

As for feeling lost - that's normal, lupus and sjogren's are chronic illnesses and it takes a long time to adjust to the news. Many of us still struggle with the knowledge.

But you have started the treatment, which is positive - in time you'll hopefully get to control the symptoms and feel better.

Hang in there x

[Mrsoliver in reply to Purpletop]

Thank you for your response. It's nice to know there are people in similar positions. I think I'm in denial a little. Just very overwhelmed with all the different illnesses.

[Thaddeus]

If it walks like a duck and says quack -Its Lupus.

[Mrsoliver in reply to Thaddeus]

Thanks for that!

[flo_IarFachYrHaf]

in a very similar situation, with mixed bag of blood test results [].. Have been taking hydroxychloroquine. since mid May, extreme fatigue has reduced as has pain in my feet. Photosensitivity not so violent on my skin and needs more exposure to help joints. Also using Biotene toothpaste and mouth wash - only for couple of weeks, makes huge difference to dry mouth.

I don't have polycystic ovary syndrome but have 3 cysts, one very new, I have been putting off drastic treatment for that while I sort out the SLE & Sjogrens, as you say it is a bit overwhelming with different things going on. I have been having anthroposophical medication that has helped with the endometriosis cysts but not the new one.

[Mrsoliver in reply to flo_IarFachYrHaf]

Wow. Thanks for the reply. Very very similar!!! I'm going to try the biotene toothpaste definitely. Where is it from?

[flo_IarFachYrHaf in reply to Mrsoliver]

I bought a whole pile of it on ebay - I got a particularly good deal. There are some multi buys at a good price. But I am now wondering if you can actually get it on prescription - free in Wales. It is particularly useful when you can't use toothpaste with SLS - foaming agent: no foaming agent + dry mouth = unpleasant. SInce then - whilst looking for sunscreen I found it at a good price here: weldricks.co.uk I might try the gel. My dentist now wants to see me every three months as the dryness can cause problems.

[Mrsoliver in reply to flo_IarFachYrHaf]

Thank you so much for getting back to me. I'm going to ask the doctor and see. Also you should ask your doctor about sun cream. Mine gave me some on prescription. X

[flo_IarFachYrHaf in reply to Mrsoliver]

I was surprised yesterday when my GP knew nothing of toothpaste etc for dry mouth, we had much else to discuss that I didn't persue but will ask her to find out [some excellent news: all tumour marker blood tests for new/different ovary cyst were fine, still have to deal with problem but relieved]

I have suncream on prescription Uvistat but it doesn't agree with my face and if skin flares up, as it has been since The Heatwave, doesn't agree with skin in general - that was a bit of a disappointment. I have been researching and reading reviews and come to the conclusion Sunsense is the best option - one for body one for face

[jennawings]

After months of endless blood tests for extreme and malaise came back showing that I had a low WBC and platelet count and a positive ANA test I was referred to a rheumatologist. Based on my symptoms - 6 months of extreme fatigue, raynauds, migraines, brain fog, dry eyes and a slight circular rash on my arm (can't remember its name) the rheumatologist queried a mild CTD and was 95% sure that I had mild SLE. He sent me away to have numerous extra blood tests specific to lupus and whilst waiting for the results I investigated SLE and it explained so much and I started to come to terms with his 95% certainty.

My blood results were inconclusive because I had a positive ANA result yet the lupus specific test was negative and my WBC count had marginally improved (first time in months) and I was sent away with a diagnosis of post viral fatigue syndrome, told to treat and come back in a few months after more blood tests.

I went back last week and my blood tests were still inconclusive as they had not changed at all. My symptoms were still present and the fatigue had not improved at all. My rheumatologist has now reverted back to his original CTD diagnosis of a lupus sort. I will be put on hydroxychloroquine soon and I have to go back in 6 months.

I do not have the other conditions you speak of but I have had a serious heart condition in the past and like you I feel lost and empty with a new diagnosis. I'm just worried in case the rheumatologist changes his mind again by the time I next go back. I hope not as I've just finally told my employer.

[MaryF in reply to jennawings]

get your rheumatologist too check your thyroid and also check for Hughes Syndrome, I have four of these including Lupus and also one other. Mary F x