I was very interested with this description of leukoplakia.
Every time in the past year that I have read a description that mentions HIV, I have been worried, just because a lot of these descriptions are similar to what I describe. But I tested negative for HIV in 2007, and then recently in January I retested just to make sure, and I tested negative. Since I have been with only one person in the past 5 plus years I am definite that I do not have HIV. But I have wondered extensively about what's going on with my tongue. I do like wine. And I seem to have geographic tongue.

I just went to the dentist last week for this problem, and then also went to an ENT. My white spots are "normal" and I do NOT have thrush or yeast in the mouth. Both dentist and ENT have assured me that I do not have any yeast and both have said my tongue looks completely normal. The dentist said I have a swollen submandibular salivary gland. That it was hard and should be checked by an oral surgeon. The oral surgeon he referred me to said on the phone that he would most likely just send me to an ENT. So I just went to the ENT. He checked my mouth and saliva out and stuck the scope down my nose and throat and said everything looks normal, he didn't see anything cancerous and that he believed whatever is going on is caused by my autoimmune disease and he prescribed me a week-long medrol/sterioid pack. My biggest problem with this is that EVERY doctor I see states my problems are due to my autoimmune disorder and truthfully this is always stated as soon as I say I have an autoimmune disorder.

But I really do feel a lump under that side of my tongue where the DENTIST said my submandibular gland is swollen. I have felt it for quite a while, just thought it was a sore or something.

So do I take the sterioid? Interesting thing is that the very night after I saw the ENT, (and $400 later) I went to a restaurant/bar. While I was telling the bartender that wine caused my gums to swell, and telling her a shortened version of everything, a lady who was having a conversation with her boyfriend suddenly stopped, looked at me and said... it sounds like a submandibular salivary gland. I had the same thing and the doctors don't know what it is! It took over a year for them to figure it out, by that time I needed surgery to remove the gland... She said her dentist and oral surgeon figured it out and it's been fixed ever since. She showed me the scar from having the gland removed. It was weird because what she said matched exactly. And just before going out I had done my research and read about salivary/submanibular glands, how ENTS don't always notice them, and how they develop stones. The lady mentioned a stone and sucking on a lemondrop... and she described exactly what I feel...

so do I go back to the dentist or go to the oral surgeon (I'll go to the one she referred me to). Or do I take the steroid to see if that helps with anything (including my red/painful toes STILL going on).

I think fate brought me to the bar - it was the weirdest thing.