Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (92)

1 day ago · Erosive oral lichen planus in Autoimmune Diseases

@grammlyn— I have seen the TOP specialists in NYC and Boston. Essentially there is almost nothing that can be done about burning mouth syndrome and OLP. The treatments are too extreme and hardly work anyway. Having these conditions for years, my mouth is now deformed: swollen tongue with scallop-like designs around the edges and distorted lips, with saliva leaking out on both sides. One of these docs told me anxiety and worry is a major factor, and when you stop worrying, it will go away. I don't believe that!

2 days ago · Erosive oral lichen planus in Autoimmune Diseases

OLP is treated with steroids. They usually work.

Sun, Apr 7 8:25pm · burning mouth syndrome very severe in Skin Health

@ristu and anyone else– about 1 year ago I read that a doctor had used some kind of "deep brain stimulation" (or deep brain something), which had 100% success in relieving BMS, and caused no side effects. There was a published paper on his research. He was in a university in the mid-southeast. At the time I tried to look him up but did not find him. Since BMS is neurological, this approach would seem to make sense. Anyone else ever heard of this?

Fri, Apr 5 9:36am · Oral lichen Planus in Autoimmune Diseases

I assume the doctor tried the usual treatment for OLP, which is steroids. They usually work, but have to be repeated. Otherwise, I can tell you that after many years of BMS, there are no effective treatments. Good luck. J

Fri, Mar 8 6:47am · Burning Mouth Syndrome in Skin Health

@destinnana Gabapentin- a high-level oral med specialist recently told me you have to take huge amounts of Gabapentin to get any pain relief; she said "if you take that much you will be in a fog."

Mon, Feb 18 6:37am · Erosive oral lichen planus in Autoimmune Diseases

@fancyrph I went to an ENT, he recognized OLP (under tongue), treated with a couple of (light dose) steroid shots, and it went away.
Can you explain what a "pulse dose" is?

Sun, Feb 17 6:12pm · Erosive oral lichen planus in Autoimmune Diseases

@ grammlyn OLP is treated with steroids, not always huge amounts. The right doc might be ENT or even dermatology. Try calling a medical school and get reference.

Fri, Feb 15 3:21pm · burning mouth syndrome very severe in Skin Health

@ ristu I have BMS for 3-4 years, with none of those conditions, and like you, nothing works. The most significant fact here I think is that the medical profession has no idea what causes it. Thanks for info.