Hi there, I've just joined this group and my story goes like this, my dad had full blown lupus but sadly passed away 16 years ago at the age of 79, but in 2002 I was diagnosed with undifferentiated connective tissue disease, they didn't know then if and what it would become, I managed to have a normal life except when I would get bouts of fatigue that would last anything from a few days to weeks but would pass, I learnt to manage and pace myself then 6 years ago I became ill with debilitating fatigue and muscle/ joint pain which has got worse over the last 18 months I was told at the time it was fibromyalgia, I have now had to give up my career of 25 years. I have recently seen a rheumatologist again and have had a whole batch of fancy blood tests looking for active autoimmune disease, I have received a letter which starts by saying
'She has Lupus Serology with positive ANA at 1:640 and positive role, she does not have extended lupus serology in terms of double stranded DNA'
All the other tests have come back normal.
Can anyone please tell if it looks as though with this result I might get a diagnosis of Lupus, obviously I don't want Lupus but I know I'm ill and would rather have a firm diagnosis of Lupus and get some treatment than to be stuck in this place that feels like 'nomansland' and left to struggle. The rheumatologist did mention maybe going back onto plaquenil which I had taken when I was first diagnosed with UTCD.
I knew I had a positive ANA and RF but at what titre it was back in 2002 I don't know, I have not been tested for Lupus since that time although I had a positive test for it and then a negative result which is why they put me in the undifferentiated category.
I have so many symptoms and struggle everyday with joint/muscle pain, bad Raynauds in my hands and feet,chronic migraines, puffy painful hands, overwhelming fatigue, constant excruciating mouth ulcers, palpitations and last year my kidney function rapidly declined but has now improved ? NSAIDs induced, some days can be slightly easier to get through ( which gives me hope) but not many.
It's going to be ages before I get my follow up appointment to discuss this so any help/advice would be really appreciated.