Hello
Due to recent frustrating experience with my useless Rheumatologist, I have now had time to think what would be the next move. I really still feel it is important to look into sjogrens as I do intinctively feel that I am dealing if not with Sjogrens, then with something AI. Have been ill for many years with the severest form of dry eye, not good at all. Have fairly advanced IC too.
I was not happy with the London Lupus clinic either. (sound like a whinger, but I am not, just know what I need to do now, at last!)
If anyone on here knows of anyone who has gone to see someone who has been genuinely interested in thier problems, I would love to know, as sypmtoms have now been persistently unpleasant for many months now. I think the British Sjogrens asso do have a patron who is a Doctor based at the hospital in Swindon, (not sure if allowed to mention name on here?) Can anyone on here based in UK help? Would be very gratefull, very down at the mo.
Callisto
CAllisto
I think you mean Dr Elizabeth Price - she is an amazing doctor. I don't see her for my SJS, but have heard her speak at three of the BSSA conferences. I have also had the opportunity to speak to her, and she is so knowledgeable. Another of the BSSA doctors is Simon Bowman in BIrmingham. I think a referral to either of them would be well worthwhile.
Kathyx
Dear Kathy
Yes thats the lady. Thankyou for your reply.
I have only suspected SJS but am currently sero negative, do have anti phopholipid syndrome, IC and very very bad eyes and mouth, a lot of teeth missing for years now. (47 years of age). My last visit to my Rheumatologist who had previously said she felt it was sjs, now says it prob down to my age!!!!!!! Despite being ill for over 20 years now. Stupid woman! She did not like it when I asked for more help than she was willing to give. Its not that I am reluctant to let go of the sjs label, its something i dont want anyway. I do feel that this is what it is however and I have been fairly bang on with past diagnoses.
I will ask for a refferal.
Thanks again
Callisto x