Hello
I haven’t been on here for a while as I had had numerous blood tests and was told “it’s not Lupus” then “it could be Lupus” “oh no it’s not Lupus” etc.
I have been trying to accept that I am never going to find out what it causing my skin problems and plethora of other symptoms. But it got too much for me a few months back, as I had a major flare and so my doctor wrote to the dermatologist to ask them to see me again.
Well I went today and they treated me like I was a new patient, which was somewhat annoying, when they have a huge file in front of them full of tests and information about my other illnesses. But hey-ho I went along with it and was doing alright until the consultant finished his examination and question asking and then he said it! “well it looks very much like Lupus to me” AAARRRGGHHHHH
Here I go again! How many times do I have to go down this road?
I understand that it may be difficult to diagnose, but surely when it keeps pointing back to the same thing time and time again isn’t it time for them to actually make a diagnosis, give it a name and then maybe start some treatment?
I am now four and a half years without name for this and at the moment I am having another flare and my lips look like I have had very bad cosmetic surgery!
Can anyone tell me where I can find some more information about sub acute cutaneous lupus, I believe this is what I have, but I can’t find much in-depth info on it.
Regards
I haven’t been on here for a while as I had had numerous blood tests and was told “it’s not Lupus” then “it could be Lupus” “oh no it’s not Lupus” etc.
I have been trying to accept that I am never going to find out what it causing my skin problems and plethora of other symptoms. But it got too much for me a few months back, as I had a major flare and so my doctor wrote to the dermatologist to ask them to see me again.
Well I went today and they treated me like I was a new patient, which was somewhat annoying, when they have a huge file in front of them full of tests and information about my other illnesses. But hey-ho I went along with it and was doing alright until the consultant finished his examination and question asking and then he said it! “well it looks very much like Lupus to me” AAARRRGGHHHHH
Here I go again! How many times do I have to go down this road?
I understand that it may be difficult to diagnose, but surely when it keeps pointing back to the same thing time and time again isn’t it time for them to actually make a diagnosis, give it a name and then maybe start some treatment?
I am now four and a half years without name for this and at the moment I am having another flare and my lips look like I have had very bad cosmetic surgery!
Can anyone tell me where I can find some more information about sub acute cutaneous lupus, I believe this is what I have, but I can’t find much in-depth info on it.
Regards