Rare infiltration of CLL resulting in brain lesions

I was diagnosed CLL 2 years ago.

From early diagnosis I experienced a tingling in my face. This developed gradually to affect other parts. Four months ago my symptoms had become MS-like, with loss of power in my legs.

MRI reveals 3 'lesions' in my brain and same in my spine. MS has been ruled out.

Haematology, apparently, have believed till now my neurological symptoms to be unconnected to my CLL and as a consequence diagnosis is proving difficult.

1. Does anyone have experience of knowledge of such a condition?

2. Does anyone have experience of Western General hospital in Edinburgh that would help me decide where to have treatment? (I do not live in Edinburgh but can choose to have treatment there).

7 Replies

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  • Ah... you are using your sister's account... had me confused for a minute... not hard to do. ☺️

    This is so rare there are only a few case reports of non-Richter's involvement in the brain.

    Here is a study done a few years ago, and unfortunately it is behind a pay wall, but it might be worth buying and reading...

    neurology.org/content/82/10...

    Here is a recent case study, with good outcome...

    jco.ascopubs.org/content/29...

    One year later, our patient is still in good clinical condition, with no signs of local recurrence or manifestations of CLL elsewhere. This case demonstrates that CLL can present as a localized cerebral disease with an excellent response to steroids and low-dose local radiotherapy.

    ...

    While on treatment for Richter's I lost most motor function in my legs and all fine motor coordination in my hands, they rushed me to the MRI, since they felt I had Richter's CNS... the MRI showed nothing, but it did reveal the sight of transformation in my L2 vertabrae... The neurological problems were thought caused by vincristine, known for causing neuropathy and nerve damage...

    My experience illustrated that this type of situation, moves out of the area of CLL into Neurology, as I'm sure you are aware, so you want to find the best neurlogical department you can.

    I wish you all the best, but this is so rare, you probably won't find many patients with your situation... please stay in touch.

    ~chris

  • Thank you so much, Chris

    We will now do some research into vincristine and rRchters CNS. Both new words till your reply.

    Will definitely stay in touch.

    Your optimistic response a good boost today.

  • If you have never had vincristine, lovely flower the Madagascar Periwinkle... don't worry about it, nor Richter's...it is highly unlikely...

  • I have CLL and brain lesions as well. 17p unmutated

  • Thank you for replying.

    I am at the early stages of learning about any of this. Reading your reply led me to this website

    cll-nhl.com/2014/04/mutated...

    I do not live in the USA but the explanation of mutated/unmutated and 17p has been helpful reading. I value this haematologist's attempt to convey the degree to which there are contradictions, paradoxes, and a vast area yet to be understood.

    I am, as a consequence, feeling more prepared for first discussion about treatment with the haematologist at our hospital in Scotland.

    To date, the terms you use have not been referred to at the 3-monthly reviews nor at 2 consultations with neurologist. This may be due to test results still pending.

    Thank you and good wishes

  • Hi, I was very interested in your post as I have just got home from hospital after a bleed from a Cavernoma (non-malignant vein formation). I was diagnosed stage 0 CLL 6 months ago. It has not been suggested that the 2 things are connected but I wonder?

    Cheers

  • Difficult diagnoses of complex and rare conditions can be quite frustrating. I wish you stamina and courage. You'll need to be a strong self advocate whatever this is. You may well have to travel even to pin this down. Has anyone connected these lesions to CLL?

    Several times I've found myself in situations where findings made no sense and doctors gave up. Every time after scads of tests I'd nearly did as well. Only taking charge saved me. Afterwards I'd sometimes ask, why didn't you believe? Why didn't you find it? If they had answers they'd say, well, it's so rare! Rare or you refused to see? But at least I was there to ask

    Whatever your lesions represent you'll be the one or at least the team leader to get to the bottom and fix things. You're on the right path and coming here is a good start. Know that there are those of us out there who are cheering you on.

    Best, beth.

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