I was diagnosed with Longstanding Lymphocytosis last year. I’m interested to hear from anyone else who suffers with this. I find that I catch viral infections occasionally (few times a year) aswell as swollen lymph nodes in my armpits, tiredness and stomach pains. I know these are signs of Chronic Lymphocytic Leukemia. I have had blood tests recently to rule this out. As my lymphocytes seem to be constantly high it doesnt make sense that I seem to catch things more often. Any advice or suggestions please
1 Like
Dear lis,
Just wanted to welcome you to the forum, I am sorry to hear of your concerns about your symptoms but I am sure it must be a relief to know that testing has ruled out that your disease is progressing into something more serious. How does this condition effect you on a daily basis ? Does it cause fatigue etc and are you monitored on a regular basis.
2 Likes
Hi, welcome to our community forum, I cannot be any medical help, but perhaps these are the fears and questions for someone in your medical team. However whatever our diagnosis I find it seems we all share the same fears, thoughts and feelings. I am interested how you are dealing with these and of course the questions Alfie has asked. Take care.
1 Like
Welcome to the forum @Lisseyloo - I hope you find it useful! I’m really sorry to hear you’ve been experiencing challenges with your health. Our booklet https://bloodwise.org.uk/sites/default/files/documents/chronic_lymphocytic_leukaemia_information_booklet.pdf on CLL discusses diagnosis (p27), and further testing that can be done to help with diagnosis or ruling it out completely - if you’re concerned, it may be worth seeing your GP/haematologist again and discussing your concerns and any further testing that can give you more answers?
If the increased numbers of lymphocytes you have aren’t working properly and are multiplying in an abnormal way this will then mean they don’t fight infections, and stop your normal white blood cells from working properly to fight infections, which may be why you seem to pick up lots of infections. The booklet above will explain this in more detail.
I hope you’re able to see your GP/haematologist and get some answers Lissy, please let us know how you get on.
2 Likes
How are you doing @Lisseyloo - have any further tests or investigations shed any light as to what your raised lymphocytes mean for you?
1 Like