I'm just in the process of being diagnosed - 8 years after a borderline bioposy on my back and just wanted some feedback! I was told 8 years ago that it was Jessners, but could also be Lupus. In the last 8 years I have experienced bouts of tiredness, weakness and have to keep completely out of the sun - to the extent that a 20 min car journey home can set my skin off "bubbling". The last 8 months though have been really tough - lost lots of weight, stomach problems and extreme tiredness. One thing that really frightens me is the way that when I get really tired I tend to slur my words, lose the thread of conversations or just cannot find the word that I want to use.
I have just been put on anti-malarials after paying to see a dermatologist over the state of my back and my face. She will see me again in 8 weeks and said that if the rash is gone then we have our answer. I have also had some blood tests done last week and am just waiting on those results.
Sorry to ramble and be a bit bitty!