37 yr. old with KTWS and now a mystery autoimmune disease/disorder
Has anyone here or their loved ones ever had panniculitis along with their kts? my boyfriend who is 37 has ktws effecting his left leg and brain and for about a year now, starting last october, has gotten very painful (even with pain management) flareups of panniculitis on his arms and thighs (his thighs flared up so bad and so painful last month he could barely walk, he has also developed edema in his right thigh and Drs even did exploratory surgery on it and cannot find the cause for the edema and it is presenting abnormally as the skin is very hard on top and is the edema is collapsing in on itself and he is getting a patch of panniculitis on top of that ) that result in secondary infections that form abscesses with granulomas that have to be drained. The first time it happened it progressed within days from the panniculitis to the abscess, that is how quickly it happens,and it happens multiple times in a month, almost weekly, he also gets fevers. He has seen the top infectious disease Dr. in North Carolina where he lives and that Dr. could not find the cause. Nor could Drs at Duke, really none of them have ever seen anything like it. The cultures taken show things like strep and staph. They think that he's got some kind of autoimmune disorder/disease that is causing this. It is still being explored, he is on prophylactic antibiotics that seem to lessen the amount of abscesses however they are still occurring and the plan now is for him to go to NIH. I'm just wondering if any of you or anyone you know has had or is having anything like this or has any guidance like Drs who might be able to help. Thank you.