I have had CLL for more than 20 years and not needed treatment

I am struggling at the mo andnit looks as Though an Ataxia diagnosis may be the conclusion. The most dsressing aspect is relearning some control of my limbs. I cannot type well now. There was a suggestion this couold be a rare side issue of Chronic lymphocytic leukaemia (CLL) and i wondered whether anyone else had experience of this. I will have ti explore assisstive technology.


HI @nelletap, I am not surprised you are struggling at the moment, it sounds debilitating…
It is not something I have heard of, but I am not medically trained.
I have Chronic lymphocytic leukaemia (CLL) and have been on watch and wait for 19 yrs and I am 73 yrs old.
Have you discussed this with your Chronic lymphocytic leukaemia (CLL) medical team?
I wonder if anyone else can help and I will copy this to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses
Look after yourself

thank you. Fortuitously I got through to an excert in Queen Square 9ondon whoch was probably an effective route but I had to pay. My GP practice has made even routine tests previously managed well by GP fall by the waside when GP left. I am almost 72.

1 Like

Hi @nelletap,
Thank you so much for taking the time to inform us all of what you are currently going through. Not knowing what has caused these symptoms must be really difficult. It is quite unusual for such to occur in those living with blood cancer, which I’m sure you have already discovered.
Please do know that if you wish to talk anything through, our helpline is open 7 days & very much here for you- 0808 2080 888.
May i ask has your haematologist been able to refer to a neurology team?

Best Wishes, Lauran


I saw a neurologist in London but I’d been given to the care of my GP and when for my Chronic lymphocytic leukaemia (CLL) + when she left the surgery they not been very helpfu, doesn’t even organise regular bloodtests. so I don’t really have a neurology Chronic lymphocytic leukaemia (CLL) team as such but have now made contact through the current crisis with the Stoke Mandeville Emergency Day Care team and also TIA team.

1 Like

Hi @nelletap, it sounds as though you’ve had a really difficult time with this and I’m so sorry to hear that. That’s good to hear you’ve been able to make contact with the teams you’ve mentioned to get some support- please don’t hesitate to update us on how this goes?

Best wishes,