I was diagnosed with LGL twelve months ago when I had a routine blood test and follow up. I don't know anybody else with this condition. I am 67 years old and have osteo arthritis and have had both hips and a knee replaced. other than a bit unfit I feel very well. I asked my GP if it is leukemia and all he said was "depends on which way you look at it" I left it at that but wished I had asked the hemotoligist for more ino. He said I seemed quite healthy and my GP will monitor my condition. I did have three monthly blood tests in the beginning and now six monthly. I have recurring mouth ulcers and can't find anything to relieve them. I'm still searching. I'm very happy to have found this site. Pam.

Hi Pam, My name is Herman and am also from Sydney (Cherrybrook). I am 51 years old and was diagnosed with LGL during a routine blood test in April 2011. I am very interested in sharing information directly with you. I can be contacted on hgouw@yahoo.com. Cheers, Herman

Pamela311, I, too, suffered with mouth sores until my dentist told me about CloSys. It is a mouthwash (they also have toothpaste) you can find at Walgreens. I used it several times a day until they were gone and twice a day now. I have not had any more mouth sores in almost 3 years. If one tries to start I use the CloSys more often. My oncologist now recommends this to his patients with good results. I know how painful these ulcers are. Hope this helps you.

Thank you for that info. We don't have Walgreens in Australia but I asked my pharmacy and they didn't have Closys. I found it online so I will order some. I appreciate any help and I'll let you know if it works for me. Pam.

Herman, I have emailed you. Pam.

I have been to Sydney. AMAZINGLY beautiful!!!! Hated the flies :)

We are used to them! Not! That's why we have screens on doors and windows.

Hi Pam, I have replied your email. Herman

Hi all, Thanks for the info on CloSys. I have had mouth ulcers since I was 8 years old and I will try CloSys, I was dx with LGL last August.

Hi Jackfesperman, I have also been having mouth ulcers since I was young, But they disappear after 1-2 weeks. My GP always told me not to worry about them. I was diagnosed with LGL last April. I wonder if there is any relation. Herman

I also wonder if there is any relation since others have them. I go back to my oncologist in March and I am going to see what he says about it.

Hi Pam and Herman I'm in NZ ...Early 2011, I ordered Closys from Australia www.dentalcareproducts.com.au (email info@dentalcareproducts.com.au) - maybe this is the place you found? I paid online they mailed it over... For my son, who's had LGL for 2 years. He's doing OK at the moment. He still gets some ulcers, but had a lot when I bought it. He thought it worked OK, so I hope it gives you relief. Cheers, Karen

To Karen, thank you for the information. To Jackfesperman, have you checked with your oncologist yet? Herman

To Herman: I had a lot going on the day I went and I forgot to ask him about it. Now I know why they say you should write down questions you intend to ask. Jack

I'm curious to those of you who say you were diagnosed through routine blood work, do you mean flow cytometry or the gene rearrangement test? I had a flow cytometry done and a bone marrow biopsy done because of my abnormal cbc (very low neutrphils) .my hemetologist said if I had Lgl then the flow cytometry test would have picked it up but they didn't find any signs of lgl, I still feel scared though that without the gene rearrangement they can not rule it out because as of yet they still don't know why my anc drops to like. 400 every few weeks or so, please let me know what tests you had done or what about your bloodwork lead your Dr to the lgl diagnosis.