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).
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perfecteverytime
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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.
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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.
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.
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?
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.
This post is a year old, hope you are now doing well.
My husband was diagnosed 2016 and was asymptomatic until he had a seizure late in the year. An MRI revealed a right frontal lobe solid tumor as well as diverse white matter involvement in the left. Over the past few months his motor control on the right has deteriorated markedly, as he has had several intense but different types of seizures. His type of CLL has the 13q deletion which is perfect for biologic treatment with ibrutinib (imbruvica). His blood levels seem to have normalized but there is not enough improvement in the brain lesions as was hoped. He started radiotherapy ten days ago. He's on two anti-seizure meds as well as dexamethasone (for brain swelling/inflammation), plus the immunotherapy. He needs a cane to walk now. We are hoping the weakness will subside once the radiotherapy is done and he is able to taper off the dexamethasone. That's our experience so far. Hope yours is far easier.
I have something similar too, CLL diagnosed 18 months ago with 3 lesions in liver, so far no treatment, but monitoring closely every couple of months as liver some of liver functions mildly outside normal range.
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