Hello friends and encouragers.
So I have a super rare bone disease. Here is some back story. Looking to connect some dots maybe?
both of my parents have RA, dad also colon cancer, mother sjogren's.
my rf in that last 5 years has gone 4 to 8 to 10. I know it is not much. But it is an increase in any way. Here is a brief on my craziness. If you take the time to read and reply alone, I can not thank you enough.
I have a rare bone disease called Kienbock's. Wondering if anyone has been diagnosed with this along with vascultis or lupus OR any other autoimmune disorder. Kienbocks is avascular necrosis of the lunate bone, a carpal bone making up the joint of your wrist. Necrosis is death by loss of blood flow to bone. Even more rare about this disease- I have the condition in both wrists and it was not caused by injury, which in most patients diagnosed, it is work or injury related in the dominate wrist. This has led me to believe it may be autoimmune related or vascular/peripheral related. I have many symptoms of lupus or a GI auto immune disease and they have steadily worsened.Finally in to see to specialist in the autoimmune/mystery disease world. Would love to chat wit you all in the mean time. I am a young mother that needs answers. Thank you! - Leah