Good news not so great...and I'm really angry.

[stacieann1989]

Hey....

So, if you didn't see me last post, I was excited to share with you all that the rehumy said that I didn't have lupus, (after a year of going back and forth) and that it was probably my APS mimicking the symptoms of lupus. Naturally, I told all my family and friends the good news, only to receive a letter from the rheumatology department diagnosing me with lupus .... I am so utterly confused. And I'm very annoyed, because why on earth would someone tell me I don't have lupus when I clearly do. And when I say clearly, the rheumatology department have finally decided to share that my ANA test is positive, which has infuriated me even more because they have never, ever told me that my ANA was positive, and because they never mentioned it, I assumed it was negative. I'm so frustrated. This is what the letter says - DIAGNOSIS - Mild Lupus, positive antiphospholipid lupus anticoagulant, photosensitivity, butterfly rash, positive ANA and RNP.

I won't write the whole letter out because it's quite long, but he ended it with this :

We had a discussion about her diagnosis and given the constellation of her symptoms and the previous results of her serology I would think that she has mild lupus, but I explained this to her, and that the lupus activity serology was normal.

Apart from being upset about the lupus diagnosis, I am upset about what he has written here, because at no point did he explain to me that I do have lupus, but that basically it's not high in activity. He literally said to me when I asked, do i have lupus or not? Because I'm really confused. He said, NO, you don't have Lupus.

I mean.... GRRRRR

And I'm still partly confused about what mild lupus means. I'm guessing that it means it's not as bad as it could be or something. He's put that my da DNA and complement levels are normal, whatever they are, and that's why it's classed as mild.

If anyone could help me to understand this a bit better, I'd really appreciate it. Hope everyone is doing well x

[PMRpro]

Are you in the UK? I think I would contact PALS and make a complaint. I have had letters about the appointment that bore no resemblance to what i experienced. So you need to be sure they haven't mixed up two patients. Which is perfectly possible.

[stacieann1989 in reply to PMRpro]

Yes, I'm in the UK. I will be seeing them again soon, so, I'll ask again then. And I'll take a look into contacting pals. I'm pretty sure he hasn't mixed things up as everything else in the letter is correct. I just think that this is something they didn't bother to make me aware of, and that he was concentrating more on my anxiety than anything else.

Thanks for the reply

[bluebell99 in reply to stacieann1989]

Sometimes I think they forget we are human and have worries and feelings or perhaps he was a bit too much of a coward to tell you face to face.

I think "mild lupus" means there is no organ involvement so that is good news in a way even if it was not what you expected.

[stacieann1989 in reply to bluebell99]

Yes, that's what I assumed it was. So, thank god, because that was one thing I was obviously worried about, so, I'm happy it's not doing anything crazy and just giving me the general every day kind of symptoms.

Thanks for the reply x

[Hidden]

Hi - I'm sorry you have had such a contradictory experience of rheumatology. I think your rheumy obviously lacks people skills necessary and needs a ticking off if he tells you one things so adamantly and writes something else.

I understand your anger very well because I was told categorically in January of this year that I didn't have a connective tissue disease, just "polyarthritis unspecified"- having previously been diagnosed and treated for RA for five years by another rheumy. I asked him if the fact that I'd spent a few years on immunesuppressants and steroids might have skewed my bloods and he said no very assertively. He was SO adamant and I had sought him out because he was meant to have a special interest in vasculitis and SJOGRENS!!

Then, once off steroids with a different hospital, my antibodies came back positive for possible Scleroderma, Lupus or Sjogrens so the new rheum requested a lip biopsy which was positive and it seems I have Sjogrens as my primary disease after all!

If he'd left some room for doubt I would have given him more leeway for human error. But he said categorically to me that I did not have a CT disease and made me feel foolish. I don't feel at all forgiving of him but I can't complain to PALS because he only got it wrong and that's human error -he didn't completely change the story as yours did!

Lack of organ involvement is very good though I agree - that's the main thing.

[stacieann1989 in reply to Hidden]

Gosh, I'm sorry to hear that. It's a nightmare isn't it. I'm not going to complain, just because, apart from that one mistake, he was really good and was trying his best to calm my anxiety and was really kind and looked into every symptom I was getting. I think maybe he said no on a whim to try and make me feel a tad better but then maybe on review of my bloods realized that there is a possibility.

Thanks for the reply, and take care x

[Buffy14]

Hi not sure what da DNA is was it not ds DNA . Ds DNA is increased in people with lupus . I was told everyone has some ds DNA in their blood , normal healthy people about 7 , when I was diagnosed my ds DNA was 120 . Ds stands for double stranded I think .

[stacieann1989 in reply to Buffy14]

Yes, ds DNA is what I meant (typo) Thanks for the reply and info. Take care.

[soootired]

I have had 3 rheumatologists. Your one sounds like my first one who was very arrogant and told me in no uncertain terms I was fine and didn't have inflammatory arthritis or anything else wrong with me, but on his letter under diagnosis put ?sero negative RA. He was the sort who seemed to feel it was his job to "protect" you from the truth as if you were some kind of silly, fluffy little woman! I could never get to the bottom of anything with him. I wasted over year of my life seeing him then I eventually had second opinion with my second who discovered positive ANA and referred me to my third at lupus clinic.

This one is wonderful but still on the one hand tells me "...with your kind of lupus. .." then on the next tells me I don't have Lupus as I'm sero negative. My diagnosis is still only UCTD. But I'm being treated and that's what really matters.

Have you been put on any medication? Hydroxy? Steroids?

[stacieann1989 in reply to soootired]

Hiya, thanks for the reply. Sorry to hear you've had trouble, too. And yes, I also feel like he was trying to protect me, seen as thought he was seemingly more concerned about my anxiety than anything else lol. Regards to medication, I haven't been put on anything, not even blood thinners for APS. So, I have no idea. I don't even know what to tell people. I know it sounds silly but I don't want to use the term mild lupus, just because, even though it is mild in regards to not having any organ involvement, other symptoms such as muscle and joint pains and fatigue are far from mild, so I don't want people to think I'm being dramatic. UGHHHH. Hopefully I'll get there in the end and get a clear diagnosis.

Thanks again for the reply, take care x

[Paul_Howard Partner LUPUS UK]

Hi stacieann1989 ,

I'm sorry to hear that you've had such a negative experience with your consultant. PMRpro has given some great advice about speaking to the PALS team at the hospital to see if they can help resolve this issue.

dsDNA antibodies are antibodies against double-stranded DNA and are a hallmark of lupus. It is very specific for this disease and rarely found in any other condition. Strongly positive anti-DNA antibody tests provide almost total proof of the diagnosis. The level or titre of the antibodies provides a rough guide to disease activity and is used by physicians to monitor the ups-and-downs of the disease.

Complement is a term used for a group of proteins in the blood which are involved in the immune process. In active lupus the levels of complement (usually measured as "C3" and "C4") are low and often provide a clue to the degree of disease activity.

If you need more information about the blood tests used in the diagnosis and monitoring of lupus, please have a look at our factsheet here - lupusuk.org.uk/wp-content/u...

[stacieann1989 in reply to Paul_Howard]

Hiya, thanks very much for the information. Appreciate it. So, I'm guessing he's basically saying I have lupus but it's pretty much dormant with regards to organs and so on. I have my next review in four months so hopefully I'll get some answer then. If I see the neurologist before then I'll see if he can shed any light.

Thanks again, take care. x