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Is there anyone here with Lupus?

(16 Posts)
NeoMaxiZoomDweebie Fri 12-Apr-13 23:29:39

I'm currently being investigates for Lupus. I've been going back and to for about two years after I got a facial rash. My sister has systemic Lupus...the doctor was sure mine was Cutaneous Lupus and did a full blood check...no sign....he then said it didn't mean I DIDN'T have Lupus and wanted a biopsy.

So we did one. Got the results last week...they came back as some "fungal activity and acne like activity" the Doctor is STILL harping on about Lupus and has now referred me to a consultant dermatologist (my doc is a community derm)

I'm a bit hmm because surely blood tests, a biopsy with CLEAR results, should be enough to rule out Lupus?

Why isn't he just treating the acne/fungal thing?

The only other slightly suspect symptom I have is some pretty full on pain in my feet which I've not mentioned as I just didn't think to. It's only been coming on for the last month or so.

I really don't want Lupus. Is there a chance I have it even though it's all come clear? Is that why he's sending me on to another doctor?

gallifrey Sat 13-Apr-13 22:27:18

in the words of Dr House "it's never lupus"!
I tested ana positive which seems to be one of the things for diagnosing lupus but apparently I haven't got it!

Grockle Sat 13-Apr-13 22:36:30

I have it! I tested ana positive & have lots of other symptoms (pain, fatigue, falling out hair, rash on skin exposed to the sun etc).

I don't know why he's sending you to another dermatologist. Mine is all dealt with through rheumatology although I did have a dermatology referral a couple of years ago due to odd skin but I was allergy tested & it was all clear so I was told it is just 'dermatitis'.

gallifrey Sat 13-Apr-13 23:07:52

I have all those symptoms too and was told I didn't have it! The blood tests were done by my rheumatologist and recommended further testing but my gp said it wasn't lupus when I asked him.

NeoMaxiZoomDweebie Sun 14-Apr-13 00:01:34

Grockle he says because he's "not happy" with the idea that the biopsy he did came up as it did...he thinks the results are in his words "a red herring"

hmm

Tonight I have terrible shooting pains in my feet!

Grockle Sun 14-Apr-13 09:06:44

Maybe they have other leads then? They've pretty much ruled out everything else with me. Can you ask what they are looking for or what they think it is?

Grockle Sun 14-Apr-13 09:07:07

What's he doing a biopsy of?

NeoMaxiZoomDweebie Sun 14-Apr-13 09:56:37

Grockle the first doctor did it...he's not sending me to see a specialist dermo and has sent him the the results which are that it's "rosacea like and with some fungal activity"...not Lupus Eurithmatosis or whatever that's called...I don't know if the specialist will do another one...he'll have the results of the first...we only got them recently.

NeoMaxiZoomDweebie Sun 14-Apr-13 09:57:13

Also re leads...surely he'd tell me if something indicated the possibility...at the moment his entire thinking seems to be "But it LOOKS like Lupus" which is a stupid way to think imo.

NeoMaxiZoomDweebie Sun 14-Apr-13 10:01:48

sorry he IS sending me to see a specialist dermo.

gallifrey Sun 14-Apr-13 10:20:45

I was looking up lupus last night and the diagnostic criteria is a very long list of symptoms of which you have to have 4 to be officially diagnosed with SLE. I can't find the web page now but I think it was on the NHS website.

There is no definitive test for Lupus, diagnosis is based on medical history, symptoms and blood/tissue tests.

I have SLE (+ve ANA and antiphospholipid antibodies, raised CRP, joint pains, headaches, malar rash plus Sjogrens and Raynauds syndrome, which are often co-morbid) It took 10 years, and a referral to St Thomas to get the diagnosis...I'd been fobbed off with ME, Fibro, depression and psychosomatic disorder diagnoses from my GP (and lost 2 pregnancies as a result of this)

No two cases of Lupus will present in the same way, and you might be better off with a referral to a Rheumatologist.

If you are having skin biopsies and seeing a Dermatologist then you may have Discoid Lupus (different, although allied condition where only the skin is affected)

Weegiemum Tue 16-Apr-13 16:52:50

I don't have Lupus (thanks Dr House!).

However I have a different immunological neurological condition. And you mention foot pain, which is very common in immunological conditions/neurology (do you have numb feet along with the pin, that's peripheral neuropathy!).

With ongoing foot pain you might need a referral to a pain specialist (neuro pain doesn't respond to normal painkillers), a neurologist or immunologist.

I know you don't "want" it (I didn't want CIDP) but its honestly better to know so you can get the treatment available..

mrs joe I had extensive investigations (including lip biopsy) for Sjogrens, (my granny had it) and they just currently say I've not got "all the markers" for it. Though I now have a numb bit on my lip where they cut the nerves in the biopsy!

I also have diagnosed Rheumatoid Arthritis, which fits in with the immunological basis for all these diseases.

Hope you get he answers that will make your treatment effective!!

gallifrey Tue 16-Apr-13 19:35:22

Weegiemum - I had Guillian-Barre Syndrome which is similar to CIDP isn't it?

NeoMaxiZoomDweebie Wed 17-Apr-13 11:57:40

MrsJoe thanks that's what the doctor suggested it was....Discoid. I DOES look kind of like it but having yesterday looked at a photograph of my face taken before my recent course of antibiotics I see such a marked improvement in the rash it was quite shocking.

Before the anti;s it was very dark in colour and raised too...now it's faded to pink...I might take a pic along with me to show the specialist I think...

My sister lost a number of pregnancies before she was diagnosed too MrsJoe. It's a terrible disease but I have hope because she's now under control and feeling much better.

NeoMaxiZoomDweebie Wed 17-Apr-13 11:58:58

WeegieMum I don't have numb feet at all no...is it CIPD that you have?

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