Do I Have TLGL or Do I Not Have TLGL

[Jbeaver12]

Please see my post that is shown below. I am after some support

@Do I Have TLGL or Do I Not Have TLGL

Do I have TLGL or Do I not have TLGL. That is a question that is on my mind today after receiving my latest Haematology Report from the hospital. It said there was no evidence of the previous LGL population. When you put this into Google, it terms it as LGL Clones of Uncertain Significance which was suggested to me in an appointment I had at a London Hospital in 2022. I spoke with Blood Cancer UK Support Line who advised me to speak to my GP to ask for a second opinion of my condition. Hopefully they will refer me to Dr Dima el Sharkawi who is based at The Royal Marsden and specialises in the condition which they said I had. Its 4 years since they said I had this Leukaemia and now with what they said at the last appointment, does it mean I do not have it or could it be a mis-diagnosis due to the complexities of the condition I was in at that point. I was going through Gullian Barre Syndrome as well at the time.

[Ceri_BloodCancerUK]

Hello @Jbeaver12, thanks for reaching out. It sounds like you’ve been in limbo for quite some time and I can imagine how confusing and unsettling it must be to receive conflicting information about your diagnosis.

I’m not a medical expert, and the rules of the Forum are that no one other than the Blood Cancer UK nurses are able to offer medical advice, but it sounds like you’ve already taken a really important step by speaking to our support line about getting a second opinion - that was good advice. TLGL can be complex to diagnose, and it’s completely reasonable to seek clarity from a specialist, particularly given that you were also dealing with Guillain-Barré Syndrome at the time of your original diagnosis.

If you’d like to talk through any of this in more detail - including what questions to ask your GP or perhaps how to approach requesting that referral - our support line nurses are here for you still. You can reach them on 0808 2080 888 or support@bloodcancer.org.uk.

Please do keep us updated on how you get on.

Take care,

Ceri - Blood Cancer UK Support Services

[Jbeaver12]

Hi, I was not looking for any medical input, just the support aspect, I am certainly going to phone the support line. Thanks a lot