I'm just wondering if anyone here has had a similar experience of developing a connective tissue disease (Undifferentiated, Lupus, Sjogrens or otherwise) about 5 years after chemotherapy for any kind of cancer?
My GP referred me to a neurologist as my first port of call last year when my fingers and toes were all pins and needles and I'd had 2 shocking experiences of overheating and thinking I was going to spontaneously combust. They included brutal nerve and burning pain for 8 hours after a simple hour in the sea (and sun). By the time of the appointment, I now could not be in the sun for more than 5 minutes without it scorching me, a new strange experience of Raynaud's with numbness kept recurring, also Chronic Urticaria (anywhere from 3 -50 hives at a time over 6 months) and tiny erratic blistering of my fingers. My ANA blood result came in just before the appointment and was a high positive.
Due to the skin involvement and the positive ANA, the Neurologist was convinced I had SLE or Vasculitis (Vasculitis has now been ruled out). He explained that a patient who'd had chemotherapy could rarely develop an autoimmune disease approximately 5 years later. It was exactly 5 years on for me. So, firstly, I'm wondering if there's anyone who's also had this experience? Secondly, if anyone knows of a way in which I can contribute to research? Thirdly, if not, if they'd like to help me find a way to flag this up and contribute to research?
I also want to say how grateful I am for this website. It has been an enormous help to me through this quagmire of body malfunction over the past months. Just being able to read about others going through their own mysteries and witness the plethora of support offered through kind, experienced words and the availability of numerous reading material resources has given me a lot of strength. So thank you Lupus Uk and all who contribute.