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To think I may have Lupus

(15 Posts)
catgirl1976 Sun 30-Apr-17 11:01:33

Even thought the tests for it have come back negative?

I know that sounds strange but over the last few years I have been admitted to hospital with high fevers and extreme pain and showing infections but the hospitals could not find the cause.

I also have had a couple of bouts of pleurisy and recurring kidney infections.

I have bald patches and scabs on my head - one is about the size of a 10p

I get rashes on my legs with lumps - again no cause can be found

I have Lichen Sclerosis

I have chronic rhinitis

I am tired all the time and my joints hurt

My GP has tested twice for Lupus and the tests have come back negative but every time I google my symptoms Lupus comes up.

So could I have it if the tests are negative and if not wtf is wrong with me?

I'm tempted to go back to the GP but I feel like I'm wasting their time

Does anyone have experience of anything like this?

StealthPolarBear Sun 30-Apr-17 11:03:25

No experience but that sounds awful I'm sorry. What consultants have you seen? Sounds like you need a second and third opinion.

catgirl1976 Sun 30-Apr-17 11:05:53

Thanks Stealth

I've not seen a consultant (other than a gyne for the Lichen) but the GP has done the Lupus blood tests twice and they've come back negative. But they've got no idea what else it could be and have just sort of gone "Oh well, we don't know" - which is fair enough but I'd like to know what it is and ideally get treated.

honeysucklejasmine Sun 30-Apr-17 11:06:59

There is no one single test for lupus AFAIK. Ask to be referred to rheumatology.

honeysucklejasmine Sun 30-Apr-17 11:08:00

(there are many markers which indicate you may have lupus but no definitive test. I have many of the markers, but not all. I have lupus.)

catgirl1976 Sun 30-Apr-17 11:08:24

I think I will honey

They did an ANA test and a batch of others which were all negative but something isn't right. Rheumatology might be the people to see.

StealthPolarBear Sun 30-Apr-17 11:16:14

I don't think it is fair enough. If they're giving a fixed period to see how you g followed by immediate referral if no better that is a course of action but it sounds like they're just giving up. I hope you can see a rheumatologist soon.

SaskiaRembrandtWasFramed Sun 30-Apr-17 11:26:56

Have they done a biopsy of your lesions? When I was diagnosed I had a biopsy which came back positive and then a blood test to confirm it. If you haven't do ask about it!

Fortheloveofscience Sun 30-Apr-17 11:31:02

Sounds like you need a rheumatologist. A blood test result isn't definitive, and although I'm no expert I thought there were systemic autoimmune conditions other than lupus.

When your blood tests came back negative the GP should have referred you, not effectively discharged you!

StealthPolarBear Sun 30-Apr-17 11:39:22

Woukd rheumatic arthritis be a possibility? Or are the symptoms very different?

Redblankets Sun 30-Apr-17 11:49:35

I also think you need to get that Rheumatology referral but can I ask have you had your thyroid tested? Thyroid symptoms don't always manifest as the typical tiredness& weight issues.

FuzzyOwl Sun 30-Apr-17 11:55:51

Instead of lupus, how about fibromyalgia, mixed connective tissue disease etc? I agree about seeing a rheumatologist or an immunologist if you want an autoimmune disease confirmed or ruled out. I don't think a GP would ever diagnose you with such a condition anyway.

Lupus is known to be a great minicker of other illnesses. I'm not sure if it has changed but it always used to be that you needed to meet a certain criteria from a list but blood test results were not always necessary (you could be seronegative) but I think you might struggle to get a diagnosis without being positive for ANA and anti-DNA etc.

Willyoujustbequiet Sun 30-Apr-17 11:58:30

I agree with Red about a thyroid test.

Lyme disease?

PeachPlumPears Sun 30-Apr-17 16:36:59

Sjögren's syndrome? I know someone who got diagnosed with that after lots of investigation into Lupus.

thisisthevixxen Sun 30-Apr-17 21:03:43

I have FM, you need a specialist. GP won't diagnose you without some sort of yes/no blood test (and probably even then) & you need a consultant to start you on treatment regimens. I would say either Rheumatologist or endocrinologist - the best specialist is actually probably your GPs call but you can refer yourself if necessary. You may have to demand to be referred I'm afraid. Welcome to the world of chronic illness in a struggling health service system. If you don't fight, you don't get. Good luck, don't give up. You CAN feel better than this, you are not doomed for the rest of your life. Treatments are available and some combination will help you. Just don't take no for an answer & come back on here if you need to vent. Or join any one of the numerous invisible illness on line communities. We get it xxx

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