Nixie7
03-13-2017, 12:45 AM
Hello Everyone! My journey began 3 years ago when I had severe sinus issues , swollen lymphnodes, and a rash on my leg. Unfortunately, no one put it together. They sent me to a reheumatologist who was horrible, and tried to sell me vitamins. I had pretty much been on steroids for 2 years, so I was feeling better and the symptoms were at bay. Move forward a year and I started getting the rash again. I went to a dermatologist and she sent a biopsy off which showed psoriasis. So, I am thinking my sinuses and Psoriasis aren't related. I am using cream and the leg rash starts getting pustules. I go back and my dermatologist says it is a weird presentation, but maybe it is infected. They do a culture. I start thinking this is not right. In a week my pustules opened up and it is very painful. I decided to call a different Rheumatologist and I brought all my old tests and biopsy results from my lymphnodes. I have a saddle nose that I thought was from wiping my nose soooo much. She said no, and you don't have psoriasis. I am pretty sure you have wegener's. How did they miss this she said. Your lymphnodes biopsy clearly shows a glomerular disease. Now, I am waiting 2 weeks to go back for a treatment plan and my leg is getting worse. I was looking for threads on this, but I haven't found any on here. Just curious if anyone's skin was affected by this disease. At what point do I not wait. She showed me pictures where the skin starts necrotizing. Thankfully, I am not there yet. She is waiting on a couple of labs to create my treatment. Just looking for how to control it in the meantime? I am very thankful to have found this thread as I am a newby and don't know much.