Hi I have posted a few blogs, and so if I am repeating myself too much I'll just blame it on the stroke!
Okay, I'm trying to piece together my history, and wondering what may be relevant. I'm also getting new symptoms and would like to know what is meant my the term lupus like syndrome!
Nine years ago I was diagnosed with Multiple Sclerosis - this has been confirmed as fact by Prof. Hunt. (I know Lupus / APS can mimic MS). Some time previous to my diagnosis of MS I had severe pleurisy. Is pleurisy assosciated with SLE?
Basically, is the term lupus like syndrome used when the diagnosis is new and it's a "wait and see" when blood tests are inconclusive?
As a child I suffered chronic back pain which has stayed with me to this day. Age 7 I couldn't walk around the shops with my mum without needing to sit down.... I have had classic migraines from about age 11.
So then I had a major stroke aged 34, which went un-noticed by A&E as it was assumed to have been an MS relapse. (upsetting) So my APS had surfaced, and since that day I have been in a wheelchair for the majority of the time, and need carers. I am 37 years old. Several arterial clots and massive PE's and a TIA later I'm still going!
My question really, is what is lupus like syndrome? Does a history of pleurisy and long standing low back pain from walking indicate anything at all? I have also been diagnosed with Pernicious Anaemia and I am folate deficient despite being vegetarian. Clearly, I am an auto immune person.
Is it possible to have SLE And discoid lupus (plus everything else)? I ask, because I wonder IF I have SLE. And I wonder if I could have discoid lupus in addition - or if skin rashes as I describe mine are common in SLE. I am developing a rash which increases in number and size each day. It starts like a red sore, then sort of dries up and it itches sometimes. They are no more than little dry patches of raised red skin, but each day I wake up with a few more.
Do you think that being told lupus "like" syndrome might be something that's said to reassure when the diagnosis isn't certain, or is is a benign type of lupus? I am taking 400 mg of hydroxychloroquine for this.
Despite my medical team being amazing and having my complete trust I can't seem to get them to give me a straight answer on that one, so I'm just hoping that somebody might be able to give me their own thoughts.
Thank you for reading this long post, I am sure it doesn't make much sense... I tried!
If anybody has some pearls of wisdom they would like to share and discuss, please, please do because I really need to understand my body again.