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Hi,
Visited Dermatologist today (could only tell me that she knew of a few lupus skin conditions
) - suspect shes never seen/treated anyone with Lupus (shes a Lt Col/military dermatology specialist)! She says that my Immunologist suspects Porphyria due to the raspberry rash that I got from the sun whilst wearing my jeans.
She was very sweet and took all details and is going to read all my many hospital records. Is also going to try and get St Thoms/Dermatology to try and track my notes from 20 years ago and St Peters from 10 years ago. I think shes being very hopefull that my notes will still be available somewhere in a dark dungeon!
Outcome for the moment is that I'm being tested for Porphyrin levels (blood,urine,faeces) and will have to go to local hospital in next few days!
She said that she would probably refer me to St Thoms 'photobiology dept' to run more tests and studies!
Has anyone with Lupus been seen by the Photobiology Unit/Dermatology at St Thoms?
At least i'm finally being tested for all the other things they forgot to test for whilst busy concentrating on Lupus!
Would be intersted to hear from anyone in the know about Porphyrin!
Love Lesley
Visited Dermatologist today (could only tell me that she knew of a few lupus skin conditions
She was very sweet and took all details and is going to read all my many hospital records. Is also going to try and get St Thoms/Dermatology to try and track my notes from 20 years ago and St Peters from 10 years ago. I think shes being very hopefull that my notes will still be available somewhere in a dark dungeon!
Outcome for the moment is that I'm being tested for Porphyrin levels (blood,urine,faeces) and will have to go to local hospital in next few days!
She said that she would probably refer me to St Thoms 'photobiology dept' to run more tests and studies!
Has anyone with Lupus been seen by the Photobiology Unit/Dermatology at St Thoms?
At least i'm finally being tested for all the other things they forgot to test for whilst busy concentrating on Lupus!
Would be intersted to hear from anyone in the know about Porphyrin!
Love Lesley