After presenting at a new dentist's office last week and being told that they weren't really familiar with SjS, I was feeling pretty bummed. I'm a white knuckler to begin with, so to have to undergo tx with a dentist that doesn't understand the complexities of SjS, I was pretty apprehesive.
This morning I got on my dental plan's web site and started calling dentists that were listed as contracted providers. I told the receptionist what I was looking for and she said she'd give my message to the dentist. Lo and behold, the dentist returned my call approximately an hour later. JACKPOT! I found a dentist in my area that was an instructor for a dental school in San Francisco who not only treated many HIV/AIDS patients (they have similar mouth/dental issues as SjS patients), the dentist's mother had SjS! We talked for 15-20 minutes about the challenges that SjS patients have with infection, thrush, decay, etc.
I go for an initial consult on Wednesday. Although I am still apprehensive, I am feeling so much more hopeful since he's experienced in treating patients with similar issues as SjS, his mother had SjS and he's willing to battle my medical insurance carrier for coverage under the medical policy for dental care since it's a medical condition that has caused my dental problems.
I hope I'm not dreaming....................
That's great Bonus Mum, you got yourself a good fellow there... Sounds tho' he know the stuff on SS..
Hope he sorts out all your dental problems..
I no longer have that worry.... got dentures now, but still get troubles with the mouth, ulcers, sores and coating on tongue.. I get paranoid about having a clean mouth. It's such drag complaint!! Dolly
Bonusmom,
This is your lucky day, go out and buy a lotto ticket ;D
Alright Bonusmom! Congrats lady, it's about time lady luck found you!!!
Patze