I had a patient last year with something similar sounding-it was exceedingly painful, and nothing was helping her, either. Apparently, it took a good many doctors and tests before anyone was able to give her a diagnosis. They called it a “BENIGN MUCOUS MEMBRANE PEMPHIGOID". Apparently it is also an auto-immune disease, and will eat the mucous membranes away, also eventually spreading down the esophagus and all through the alimentary canal, to the anus. At present, like most auto-immune diseases, they have no cure, but can only manage it. Dapsone and Prednisone are two common drugs used to manage it, but they'll often cause other undesirable effects, as you probably already know.
And, for my patient, they weren't really helping with the pain, which was really unbearable. I know her doctors were doing everything they could, were very compassionate, yet nothing was helping. I was able to find her a homeopathic remedy that seems to be helping her, and her symptoms have almost disappeared completely. That is something that needs to be chosen on an individual basis.
But, because neither of us could meet for over a week, I did have her pick up a tube of this homeopathic toothpaste to give her some immediate relief. Although it didn't cure the problem, she did report that the pain was greatly lessened. My environmental dentist carries it and recommends it to all of his patients, as he's seen very good results with it. You can do a search and find many online sites that carry it. Personally, I like the taste of it, how well it lathers up and that it leaves my mouth feeling clean and fresh (I HATE most natural toothpastes-can't stand te cloying taste they usually leave!). I find it's good when someone has very sensitive teeth, tends to frequent cankor sores or gums that bleed easily.
It's somewhat pricey ($12-$15/tube), but you really only need a tiny dot of it, as it foams up so well, and mine has lasted an incredibly long time. Anyway, no matter what your diagnosis, this may help to relieve the pain. And, you might want to ask your doctors about this other auto-immune disease, too
Here's the name and the ingredients:
Orarex Maximum Care Formula (MCF) Toothpaste
Active Ingredients (In a base of lactose)
Homeopathic Ingredients:
3X Carbo Vegetabilis (Vegetable Charcoal).......thrush, gums that are detached from teeth and bleed easily, gum boils, vesicles and pustules, gum hemorrhage: when brushing teeth, when sucking on them, from touch, easily, oozing of blood, indented gums or tongue, Putrid or offensive breath; Pain: while chewing, from salt, touch, biting, burning, raw, smarting, as if burnt, as if excoriated;
Swelling of gums; Ulcers: bleeding, deep, painful, burning, purple.
Teeth; Sensitive to: air, chewing, cold, touch
3X Plantago Major (Plantain)...... Thrush, Gum boils; Easy hemorrhage of gums; offensive or putrid breath; gum ulcers.
Teeth: Sensitive to: air, cold air, chewing, to touch; grinding;
Caries, rapid or premature in children
3X Calendula Officinalis (Marigold)......Profuse hemorrhage of gums, esp after extraction; Inflammation, infection and swelling of salivary glands. Teeth: Complaints after extraction, pain after a filling, Tartar build up.
3X Staphysagria (Stavesacre)......Gum Abscess, thrush; gums detached from teeth; gum boils, vesicles of gums or tongue; Hemorrhage of gums: when brushing teeth, easy; Inflammation of tongue or salivary glands; Bitter, slimy mucus; Putrid, offensive breath; Pain: burning, raw, sore bruised, like a splinter; swelling glands and gums; ulcers on tongue
Teeth: Caries, decay, as soon as they appear, premature in children, rapid decay, crumbling, difficult dentition, loose sensation, pain from cold air, from biting teeth together, from brushing, after chewing; Sensitive when chewing, to cold, to cold drinks, to touch
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