Hi everyone. I am new here (and newly diagnosed) but wanted to share a little about myself.
A year ago I had lumps on my neck, which after biopsy were thought to be a form of cutaneous lupus. My general practitioner ran a series of blood tests and my ANA was 1:640 anti-centromere.
I went to a rheumatologist 2 weeks later who reran the blood work with a specialty lab - ANA was 1:2560. At this point I had no clinical symptoms and she told me it is possible I may never develop any. I had a baseline Echo and continued life as normal.
A few weeks ago my life was turned upside-down.
I began experiencing excruciating pain in my finger tips on my left hand. It felt like they'd been slammed in a car door and I could not use my hand at all. Went to general practitioner and then ER after 2 of them turned purple and would not change back to red. Both thought possibly Raynaud's but it was not a classic presentation.
Got in with rheumatologist again who confirmed Raynaud's and explained that with scleroderma the presentation is worse - not a typical turn white and back to normal in 15 min. I had excruciating pain with no relief for about 2 weeks. She put me on norvask and sildenafil (viagra) 2x day and baby aspirin and the improvement was night and day.
I saw her again this week and will see her again in a month for a baseline chest xray. Then it will be a cadence of every 3 months.
She says I may never develop other symptoms but chances are I will in a year or two.
Long story short - I'm terrified? Sad? Angry? Happy to have a good rheumatologist? Grateful for a supporting family? Grateful for a job that let's me work from home when needed?
Very mixed emotions. Glad to find this group.