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I'm new to this forum, but have been managing what I'm told are typical oral LP inflammation, ulceration & erosion since childhood, with early onset gum recession too....despite a lifetime of what dentists' & hygienists' have always called superpower oral hygiene. I have infant onset systemic lupus and ehlers danlos type hypermobility. Amongst my diagnosed secondary conditions are raynauds, erythromelalgia, sicca syndrome (virtually sjogrens) and vulval lichen Sclerosus. Unfortunately I went without the nhs recognising my version of lupus until 4 years ago. Until then I've been attending various nhs clinics + A&E for a few major crises. I've always been well informed & conscientious about lifestyle management inc antiinflammation diet & supplements etc. Since systemic treatment began for lupus (daily antimalarial hydroxy + immunosuppressant mycophenolate with Prednisolone tapers as required) I've felt better than I have since the 1970s (I'm 61).
Of course, by now I'm used to presenting my case in clinics to consultants. But that acquired expertise (haha) hasn't extended so much to dentists & co. E.g. Somehow I let my dentist get away with a failed molar root canal turning into osteomyelitis of the upper jaw in the course of 20 years of simmering symptoms. Since that nightmare experience was sorted by maxillo facial + ENT. + oral surgery in 2011-12, I've become more of an expert patient where my mouth is concerned
but, even so, somehow, I managed not to realise the seriousness & severity of my lifelong version of what seems to be OLP. But during a recent bad erosion that got do infected I needed a week on antibiotics, my dentist told me she thinks I have OLP. So, finally a convincing explanation for my life of oral misery. Yikes: why am I happy & excited?! I think it's called diagnosis hysteria or something?
anyway, I've booked a feb appt with a london periodontist who practices once a week in a big town near me at a top dental group, which receives referrals from my rheumatology clinic. And am doing my usual prep for this first consultation....which involves a summary of my medical history (.diagnoses, procedures, medication generally, but with particular emphasis on the oral stuff). AND meanwhile have actually figured out how to take quite good pics of the inside of my mouth!! YES!! am delighted that most of my symptoms are putting on good performances: the big haematomas that turn into monster erosion ulcers, the gum & roof of mouth ulcers/scrod ions, the edge of tongue inflammation & the gum inflammation etc. I'll get a good selection of these printed for the periodontist.
So, am feeling reasonably well prepared....but could really use some encouragement & tips from experience OLP patients...help, someone?
thanks in advance
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