What were your first signs of lupus before diagnosis!?

[Domi1041]

Hello everyone...I’m yet to be diagnosed but I’ve test positive for anti nuclear and anti smooth muscle antibodies (both weak positive) ,along side with experiencing all the strange pins

And symptoms all over my body that come and go with fatigue also!seeing neurologist in December but just wondered how everyone else’s disease first began to ring alarm bells as I have not had any rashes as such??get burning sensations and had small round bruises appear but not this butterfly rash people talk about?!!

Thank you any feed back would be great

[Tess_Little]

Hi Domi.....thanks for your post which caught my eye. Only been on this forum a few days but have noticed how different everyone's lupus journey has been. It's a step toward diagnosis that you have positive immunology blood tests. It seems like the tests carry more weight with rheumatologists as opposed to symptoms. My ANA has only ever been borderline but been under NHS rheumy for 10 years. My symptoms started with excruciating pain in both shoulders then moving to other joints + blistery rash on legs + low platelet count. Not sure rheumy even takes me seriously now after all these years as currently being reassessed despite progression of symptoms to include malar rash, Sjogren's and Raynaud's symptoms, joint swelling and redness, the list goes on. Good luck with everything and hope you get some answers soon!

[Bebe76]

Hi Domi1041, not everyone with lupus has rashes. Lupus can present with a number of different symptoms, but not everyone will have the same ones, and that makes is difficult to diagnose sometimes. You rheumatologist will consider all of your physical symptoms as well as blood results when deciding of you have lupus or some other autoimmune disease.

[Domi1041 in reply to Bebe76]

I’ve been referred to a neurologist only!my gp was very honest in saying she doesn’t have a clue what the results all mean (antibodies) and that she will let the specialists decide and then referred me to neurologist !?x

[Bebe76]

The anti smooth muscle antibody test is for autoimmune hepitis. Your ANA was weakly positive but that can occur in healthy individuals in the general population. Did she run other blood tests such as anti dsDNA? Did you have joint or muscle pain? Lung or heart issues? Low red or white blood counts? Here is a good resource to start with lupusuk.org.uk/diagnosis/

Or

mayoclinic.org/diseases-con...

People with autoummune disease can experience neurogical issues. If the burning sensations are your main problem then perhaps neurology is a good place to start but if you suspect autoimmune issues you may also need to see a rheumatologist.