My daughter has been told today that she appears to have vasculitis,which has damaged her heart valves,skin,had affected her vision,severe fatigue and much much more.she is on lots of meds for supposed systemic lupus,so she feels much better than she has done for a few years.she was told today it isn't lupus,but vasculitis,and that she had probably had it since a child,due to all the symptoms that she had.
She had to see a rhumey on monday,she has never seen one,even though she was very ill with suspected lupus a year ago.
What I really want to know is what happens now?she has been told to watch her heart issues and her eye issues(had nastygmus and tunnel vision gor a few years,also scarring of the heart valves.
Are there many here on the forum that have had major problems with small cell vasculitis.She hasn't been given a name for the type as of yet.
Many thanks in advance for your input.Sandy.