Hi, I'm not sure where to start really but here goes. 30 years ago at the age of 16 was diagnosed with polymyositis after having severe weakness, pain and fatigue. I went into remission at 22yrs old. I had several miscarriages and a termination at 24 weeks due to the baby not growing properly & he would not have survived because of blood flow issues, it was found I had APS.
I had a good few years ( about 15yrs) without any symptoms apart from fatigue, rashes on my knuckles, aches and pains but nothing major. I had some bloods done and my ANA came back Jo 1 & Ro positive, it was suspected I had mixed connective tissue disease. Last year I had a CT scan on my lungs witch showed lung scarring & a few weeks ago after I've been suffering terrible brain fog, forgetfulness, tiredness & all I can describe it as is shaky eyes, I had a brain MRI. On Sunday the rheumatologist rang to say my brain had scattered white patches where small blood vessels had died due to not enough oxygen & I needed blood tests done & start aspirin. He said it goes along with my lupus?? I didn't know I had lupus? He asked me to go for bloods yesterday and the nurse said they were to rule in/out lupus.
I'm now worried & confused, does anyone else have any experience like this? Do these sound like typical symptoms? I know I should wait for results but I'm just so worried, I'm mentally exhausted with it all.
Thank you for reading Nessa