Not yet diagnosed
Hi everyone, I am glad to have found this website and look forward to meeting each one of you. I haven't been diagnosed yet with Lupus but will come January. I had Stephen Johnson Syndrome in December of last year, I was hospitalized in CICU for 3 weeks not knowing if I would survive. I finally pulled through but have been extremely sick in every area since then. My father has Lupus and it was mentioned at that time so I was tested for it. They say those with Lupus have a higher chance of developing SJS, that's why I was tested. They didn't diagnose me with it, said SJS could affect results. It's been a year of pain for me and I will have insurance in January to be tested. I've had every symptom of Lupus except the sun one. My list goes on and on. Has anyone here woth lupus ever had SJS?? I feel like I'm going crazy not knowing if it's Lypus I have causing everything or prolonged effects from SJS.
Hi Leahm and welcome to WHL! I have not ever had SJS but I am sure with all the people on this forum someone will come along who knows something about it. I wish you luck on your testing in Jan. Few of us get lucky enough to have the test results come out conclusive the first time (or 2nd, or 3rd or...LOL) we are tested. It sounds like you have had a really rough year so my hope for you is that 2011 is much better than 2010.
Please keep us posted on how things are going and feel free to read through the old posts or start new ones if you have questions or just want to vent. I look forward to getting to know you
Thank you Mari, I will Definetly keep updating, I do belies it is Lupus and hopefully will be at ease. I just hope there are medications out there for me since my body rejects so many.
Wow. I've heard of SJS, it is a horrible illness. Was yours a medication reaction? I'm so sorry to hear you had to endure that, but very glad that you survived.
Sorry to hear you've been very ill the last year with SJS and it sounds like we're both waiting for january, they've done some diagnosis on me but still waiting more blood results and x-rays and like yourself mine came from my father and was born with it but have not come to SJS as yet.
It's a very flustrating illness in every way ansd i hope you never have the one where your affected by the sun because it's so terrible, they've had me on steroid cream after another and now i'm just managing till i see the skin specialist also in january.
You have joined the best site with WHL and our large family, who understand in so many ways and like mari said we love to hear how our many's are getting on and also with medication.
Love Terri xxx