Can anyone help please?

[Jodelights]

Hi everyone. I am 9 years undiagnosed 🙄 my Rheumatologist thought I was a possible for Lupus but wasn't prepared to diagnose me there and then, this was 2015.

I had had a positive Cryoglobulinemia blood test which was negative for Hep C, he said this was an indication of Lupus?

Has anyone else got Cryoglobulinemia and a diagnosis for Lupus??

Also, do you have to be outside in the sun for the rash to appear? Is the skin where the rash appears very hot to the touch? Can the rash appear during the night? This has happened twice now and woken me up.

I've felt very unwell for the last few weeks now and can tick most of the common symptoms boxes for Lupus?

Uncontrolled Anaemia

Hair loss

Fatigue

Migraines

Joint pain... my knees, elbows and hips, plus my back

Fluid retention so I don't know if my kidneys are working as they should be.

Thanks in advance xx

[KayHimm]

Jodelights -

I think you should make an appointment to see your GP. Tell them about your past test. With your rash and systemic symptoms you need to be evaluated.

Keep us posted.

K

[Jodelights in reply to KayHimm]

Hi Kay, Had an appointment with GP today, I forgot to mention that 🤦‍♀️

Blood tests on Monday, so we'll see... watch this space!

[soul22]

Hi nice to meet you 😊

Oh my well he should have,

I can get rash in bed if in flare,more often under indoor lights.

It's not easy get diagnosis it's a picture of sytpoms such as you describe.

All best definitely see GP aswell

[stiff19]

hope you get the answers, I have systemic problems for around 7 years and you are 9 years in, how do you cope its so hard not having answers. good luck and best wishes 🤗