Not fully diagnosed yet

[Bethany_rachel]

Hello

So recently been told I may have lupus and they did my bloods and I’m now waiting for them to come back. I was just wondering if anyone has the same symptoms as me such as feeling constantly tired, pain in left hand, pain in left knee, pain in left foot, blisters on finger tips, itchy skin all over (especially legs and back of calves) with no visible rash, always I’ll with cold etc, IBS, severe hair loss (Alopecia Totalis), depression and anxiety, heart problems

I just want answers as it’s affecting my life and I want to get help for it! Can anyone help?

[whisperit]

Hello Bethany_rachel

You've a lot to put up with there

One of the most difficult things about lupus/SLE and related systemic autoimmune conditions like UCTD is that there are millions of ways they can present themselves. That's basically because if your immune system makes a break for independence, it can decide to attack pretty much any organ or tissue in your body. So people get any number of weird and wonderful symptoms, including all the ones you mention. Meanwhile, general feelings like fatigue (actually the commonest symptom of all) are pretty universal but too vague and subjective to make a good diagnostic test.

That's why we are often left with blood tests as the main indicator. Even then, it can take many years to get a definitive diagnosis.

Have you seen the LUK leaflets here? There are a bunch on the "Home" page, including this one on symptoms and diagnosis.

lupusuk.org.uk/wp-content/u...

In any case, please don't despair if you don't get a clear answer right away. Keep going until you find a doctor who can give a credible account for the problems you have. And do post again here if you want more specific help.

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[Bethany_rachel]

Thank you so much, I have an appointment with the Rheumatologist again at the end of April so hopefully I can get some answers at least. I’m just exhausted all the time and it’s effecting my work life quite a bit but never mind

Thank you for your help

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[heda123]

Hi Bethany,

My left side is definitely weaker than the right. I seem to get more pains on my left side too. Also most of your symptoms are lupus related symptoms which I have alot of too. Sorry to hear you've been unwell. I hope you get the correct diagnosis and put on the right medication.