Diagnosed this morning

[stacieann1989]

Finally got my SLE diagnosis today. After over a year of being fobbed off and lots of tests. Not sure how to feel. There was also protein in my blood which they've sent to lab, not sure what this means. Anyway just thought I'd post as I haven't for a few weeks. Hope everyone is well! X

[stacieann1989]

Protein in urine Sorry! Not blood

[littleeffie]

Youve done well to get a diagnosis after just one year so take it as a positive .

Horrible that you have to have this and aps but at least you know what you are dealing with.

Have they started you on any meds yet because that would be the really important next step to controlling the symptoms which will make more difference to you than the diagnosis.

Relax now and let it sink in and also give yourself a pat on the back for not giving into the fobbing off!

Take care and good to hear from you again.

[stacieann1989 in reply to littleeffie]

Thanks so much no meds yet, they've decided to see how I get on in the next three months and if there is another flare up in that time. I'll re post again once I find out when I next go

Take care x

[Dan30cr]

I know it's confusing news at first. Not sure how to take it. But I can tell you that my quality of life has improved since getting the diagnosis and getting on the correct meds and also just knowing what you're up against helps. I hope that this is the first step in a positive direction for you.

[stacieann1989 in reply to Dan30cr]

Thanks ever so much

[Paul_Howard Partner LUPUS UK]

If you want to speak to somebody else with lupus about your diagnosis I would be happy to provide you with details of your nearest support group meeting or a local telephone contact? Just let me know whereabouts you live.

Protein in the urine can be a symptom of a urinary tract infection, or could suggest that you have kidney involvement from your lupus. You can read more about lupus and the kidneys in our booklet here - lupusuk.org.uk/wp-content/u...

[stacieann1989 in reply to Paul_Howard]

Thanks Paul. I appreciate it, I live in Stockport, Heaton moor

[Paul_Howard Partner LUPUS UK in reply to stacieann1989]

Hi stacieann1989 , the North West Lupus Group would be your closest. You can get in touch with them via their website at northwestlupus.org.uk/conta...

[stacieann1989 in reply to Paul_Howard]

Thanks very much

[Kerrycat7]

Hi Stacie, what were your symptoms? I am still trying to figure out what is wrong with me! awaiting results too x

[RupertKirkham]

Ask your consultant / doctor about hydroxychloroquine. It's actually an anti-malarial drug, but it works very well in controlling the discomfort from Lupus. That is, if it can be taken with all your other meds! My wife was on it and it really helped - she also has rheumatoid arthritis.

[stacieann1989 in reply to RupertKirkham]

Thanks they talked to me about meds, but, seen as though my last flare up went into remission on its own they've decided to see how I get on over the next three months, if I have another flare in that time, I'll be put on medication.

[RupertKirkham in reply to stacieann1989]

Hang in there! At least you're getting monitored. Don't be afraid to go back to them if there's a flare up and it really helps to keep a health diary, so they (and you) can look back and see what happened.

[minka]

usually its slight kidney involment THEIR WAS ONLY A BIT IN MINE STACE

[Numberone1]

I often wonder if I suffer with Lupus myself but know its very hard to get diagnosed. I think Im going through a flare at the moment. I keep getting a UTI at the moment too. What was the definitive test that helped them make your diagnosis. I don't have a the rash they talk of so always unsure. Apart from extreme joint pain etc I keep getting visual disturbances and electric like shocks throughout the body sometimes once a day.

A friend of mine has lupus and she has controlled it without drugs of any sort. She has gone alcohol, gluten and dairy free and it works well for her.

[lotsoissues in reply to Numberone1]

Hi numberone1...I hope you get some answers soon!!! You mentioned the electric shocks you get. Has any doctor been able t tel you what those are? I get them too and almost feel dumb asking my doctor

[Hayleybabes1982 in reply to lotsoissues]

I have something similar happen, always in the evening but it's feels to me more like my stomach flips in a second, happens a few times in close succession then stops...