Anyone here with Immunotactoid Glomerulopathy (ITG)?

Four years ago I was diagnosed with idiopathic ITG. I looked for information using the resources of the college library, including interlibrary loan with medical school libraries across the US, where I once taught and found that only a few, perhaps ten, people in the world have had that diagnosis. (About 70 other ITG patients have lymphoma and about 30 have myeloma. Having those other disorders drives their treatment.)

I have been watching for information about patient experiences including what tests doctors use to track the disorder, and treatments, if any. I did make contact with a FB group where four others with idiopathic ITG "meet." I am the only one who has received treatment. One other patient is also seen at Mayo (Rochester.)

I think I can benefit from others' experiences with this disorder.

Hope to "meet" you.

Janet