I am very glad to have found this community. My Mom (70) was just diagnosed with LGL, which is honestly a relief given all the other things they were testing for. However, since this is such a rare condition, I wonder if we should get a second opinion to be sure? Have any of you heard of "false positives" for LGL before? If we were to get a second opinion, who do you recommend for ensuring an accurate diagnosis? We are in Denver but would be willing to travel for the right reasons...

Dr. Thomas Loughran. He is at the Penn State Hershey Medical Center. Having identified this in the late 80's, he is the Dr I go too. Good Luck, Harley

It has been awhile since I've posted & I see this post is now 3 months old, but for what it is worth: I would second the suggestion to see Dr Loughran & get a second, third, fourth confirmation. My husband was diagnosed by the local oncologist in MI, we then visited Dr Loughran who could "not confirm" the diagnosis, & then went to MAYO where they confirmed that he did NOT have LGL. Regardless of the diagnosis outcome, it is so worth the peace o f mind to know exactly what you are dealing with.

nlbl..... i am just the opposite, i have had numerous dr's say i do not have it including DR Lough who ruled it out by me emailing him all my blood, Bmb and tcr gene rearrangement. but after i found this site I still feel like i have Lgl it is the only explainable DX for my symptoms which i have had for over 3 yrs before i ever found this site. i wish i had some blood markers that would def give me a DX of something at least