CLL and Numb Chin Syndrome

[Devans81]

Hi everyone. I am 40 year old male in the UK and was diagnosed with CLL in Feb 2019. I have been on w&w for the entire time. I have had no real symptoms with the exception of swolen glands and fatigue. Also my Spleen is swollen. Over the last few days I'e noticed that the righ side of chin feels numb, just like I've been injected with anaesthetic. I have no obvious dental problems. Through on-line research Ive self-diagnsed this as Numb Chin Syndrome, and am worried that this is very bad news. I've spoken to my Haemotologist who I'm due to seeon 14th April anyway. He didnt really give any opinion or thughts over the phone and just said that I should get my bloods done prior to the appointment on the 14th April. I just wondered if anyone here has any experience of this symptom associated with CLL? I'm worried about Richters Transfomation....I have no idea what my TBC levels are at the moment.

[Phil4-13]

Devans, sorry I have never heard of that and am very wary of anything “dr. google” diagnosis. So glad you’ll have your blood-work done soon and can get some answers. Have you received a Covid vaccine shot recently? That vaccine can cause stubborn side effects for some. Sandra😊

[Devans81 in reply to Phil4-13]

Thanks Sandra. It is such a weird symptom. I had my first Covid shot in February and didn't get any unusual side effects at that point. Will just have to see what I get back from my the bloods on the 14th.

[Ginajetta]

I have been on mbruvica since 2018. I have had CLL/SLL since 2007 unmutated. In the fall of 2019 I suddenly developed numb chin both sides of chin and right lower lip. My Family doctor suggested i see an oral surgeon for biopsy of lip. I did not do. Then saw my oncologist in Orlando in Fl and he was not sure what it was. So flew up to NY to see my CLL specialist Dr Rai. I told him a small tiny portion of right side of lower lip was a little sore and numb and also my chin was numb. When saw dr rai it was about 3 or 4 weeks later after it had started. He said he has seen many times .. i had a shingle on lower corner of lip that could not be seen and my chin numbness eventually went away in another month. I had thought I had transformation Dr Rai said no. Not sure this is helpful.

[Devans81 in reply to Ginajetta]

Hi Ginajetta. Thanks for taking the time to share your experience, and it is definitley helpful. I think that it's the uncertainty with things like this that causes the worry. I will just put it out of my mind until I see the doc in a couple of weeks 😬

[Wazza1976]

I was diagnosed with CLL in 2016 and went on Chemo in 2019. Was in remission for about 2 years and unfortunately the CLL returned at the beginning of this year. I am currently doing the wait and watch for sudden spikes in bloods, but about 2 months ago I had a viral infection and also experienced the numb lower lip and chin, which lasted about a week on and off. When I got better, the numbness went away. I got ill again about two weeks ago and the numbness returned. It's been numb now for the full two weeks and my doc has scheduled and MRI. Hopefully this will highlight the cause of the numbness, as my flu has passed and yet my chin and lower lip is still numb.