Thank you for your replies. I live in Iowa and began going to the Mayo Clinic in March. They have been extremely thorough but have not yet looked at my tongue/gums, even though I mentioned it at my initial visit. I know that the combination of EDS (rare), anemia and COPD was a diagnostic challenge. My doctors may have been thrown off track by my presentation. I was at the clinic two weeks ago (I return tomorrow) and my physician was interested in checking out my salivary glands. I took photographs of my tongue and put up a website for her to see prior to my visit. I was horrified when I saw the photographs of my tongue. I suppose that's because I couldn't see as far down my throat as the camera could. The lump on my tongue (and gums) has been there for over a year, and I always thought they were due to a lupus flare-up (seem to change in size from time to time). Lupus and Sjogren's have since been ruled out by my team of doctors. I get some comfort knowing that I am being treated at one of the best facilities in the US.

Thank you again for your replies. I will keep in touch.

Vicki