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hi has anyone else been diagnosed with lupus and then even tho still suffering with all symptoms had negative tests, ive been told that 9 out of 10 people test positive and 1 test negative but still have Lupus could i be that 1, i hate it feel like a guinea pig every time i go to hospital they poke and pull you about ,on planqenil at mo which helps a bit. so fed up and confused i was diagnosed in 1993 with mild lupus but still feel upset and depressed about it all Andi xx
 

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Hello Andi
I'm pleased to meet you but sorry that you are feeling so unwell. I know from my own experience that moving around a lot rarely helps to getting the best consistent treatment. I am sorry that you met this doubting doctor especially as it seems to me that you are undermedicated. OK he didn't take you off the meds but he apparently did nothing to try to help you feel any better

There are a few people who have no positive bloodwork but it is very rare, especially for none to develop with a few years of diagnosis although of course treatment can cause antibodies to disappear even though symptoms remain. Maybe you are one of those very few people.

I suggest you get copies of the test results that have been done recently. That way you can check that all the right ones have indeed been done and very important, get to know more about the disease and how it is affecting you. Take charge of it, as they say, and get empowered.

I guess you can't access the records of your initial diagnosis. It would be useful to know the basis on which lupus was diagnosed at that stage. There are other aspects of blood work apart from the antibodies that can indicate disease. It could also be interesting to know who or where you were diagnosed

If you ask here there might be a lupus specialist centre in your locality where you could get reassessed and more expert and effective treatment.

Consultants usually send test results and a letter to your GP. You may have to educate your GP too as you probably need to get a tertiary referral, that is to a further lupus expert. ( It's possible that this consultant doesn't know much about lupus as not all rheumatologists are familiar with it or not enough to think outside the box )
There is always the remote possibility that you were incorrectly diagnosed: not having detectable antibodies ( assuming that you didn't have them way back) works both ways both for and against wrong initial diagnosis.
I was surprised to hear that about 5% of patients referred to a particular tertiary centre turned out not to have lupus, but that wasn't in the UK or USA. A lupus diagnosis isn't given lightly.

There's a greater possibility that other problems have developed since then that are accounting for some of your symptoms. Often when there's a lupus diagnosis all problems are put down to that for ever. Anemias, whether lupus related or not, thyroid problems & diabetes can all cause similar symptoms and can go unlooked for amazingly often.
As for the depression, feeling unwell all the time sure is depressing and lupus itself can cause depression as a symptom. Moving around a lot is very stressful and it is often the woman who bears the major brunt having to find new friends and settle the children down as well as organise the household. Sometimes the trauma is lessened by knowing that one has made a move for the better in the long run but it is still very demanding initially and even worse if you know it's not permanent. Stress does a real good number on lupus.

It often takes determination and persistence to get the best treatment for oneself especially in a healthcare system like the NHS. I hope we can encourage you to fight for the best for yourself.

Let us know how we can help you have a better quality of life, for yourself and your family.

Bye for now :)
Clare
 
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