Does anyone get 'internal vibrations or tremors'?

[thomson]

Hi everyone - firstly, thanks for this very valuable forum. My husband was diagnosed on 20th December, after initially going to GP with what he describes as 'internal tremors and vibration'. This is not painful, nor is it visible externally, and I wondered if any other people with CLL have experienced anything like this? It disturbs him as he is always aware of these somewhat peculiar sensations which he feels all over his body. Just wondered if anyone had any further information which might put his mind at rest. Thanks.

[Newdawn Administrator]

Hi Thomson,

I haven't personally experienced this but was surprised on googling it how many people report this sensation (that do not have CLL), including children. I am aware of the child of a colleague reporting these sensations which is why your post prompted my interest.

Has the GP been able to suggest a cause or referred your husband to a neurologist? I'm sure you will have researched this too but obviously it's a personal diagnosis he needs to eliminate any possible neurological reasons. There are many theories as to why people experience this sense of 'inner vibration' it would seem ranging from disruptions to the GABA receptors or basal ganglia in the brain (that governs movement regulation) to general anxiety. It sounds to be one of those conditions that's more distressing than harmful but nonetheless only a qualified physician could establish that. From what you say, it sounds more like a sensation than a tremor that manifests itself? Must be disconcerting for him.

I hope he manages to establish the cause. Be interesting as you say to know whether others with CLL have experienced this or whether it's a condition unrelated to CLL.

Sending best wishes to you both,

Newdawn

[thomson in reply to Newdawn]

Hi Newdawn - thanks for your reply. The good thing about these vibrations is that it meant him visiting his GP which led to his early diagnosis of CLL. He has been referred to a neurologist so hopefully something may show up. Thanks again for your reply.

[Rileyesq]

Dear Thomson,

I wondered how long this has been going on. I experienced a vibrating sensation in my groin/leg area a little while back which continued for some months. It felt like my mobile phone was in my pocket on silent but vibrating. After a visit to my GP is was put down to movement, some exercise such as cycling can cause this. Eventually it just disappeared though! A visit to your GP would be the first point of call. I always think everything is connected to my CLL when often it is not.

All the best

Rileyesq

[thomson in reply to Rileyesq]

Thanks for your reply - he is being referred to a neurologist so hopefully he/she can advise further. Just wondered if it could be connected to CLL as we are still very much in the dark about symptoms etc. Thanks again!

[HAIRBEAR_UK Founder Admin]

Hi Thompson

It is very difficult not knowing what is "normal" to experience as CLL does behave very differently in different people and it is very early days and must be an incredible shock. As Rileyesq suggests it is very easy to think everything may be connected to the CLL.. Often CLL is diagnosed during investigation into an unrelated symptom/condition or by chance from the blood. CLL does not progress in all of us ,if it does tends to do so slowly. Have you had much detail yet from your consultant?

Good luck with the neurologists appointment. I do remember my own CLL diagnosis came as a result of other diagnosis this made things harder when trying to get a clear diagnosis and recognise symptoms. I myself experienced vibrations like Rileyesq primarily in my legs. But after recovering from another issue I was able to become more mobile and lose a little weight they seemed to dissipate and I rarely feel them or notice them.

Have you found the latest patient information booklets? Leukaemia and Lymphoma Research have just published their updated CLL patient information booklet this is a good place to start.

leukaemialymphomaresearch.o...

From their updated website signs and symptoms: leukaemialymphomaresearch.o...

Nick

cllsupport.org.uk/

[thomson in reply to HAIRBEAR_UK]

Thanks Hairbear - and thanks so much for the link to the CLL patient booklet. He was given NO information whatsoever which was disconcerting - he has been basically told that there is nothing to worry about, and to come back if he gets any symptoms! He has also been told that he will have blood tests every 6 months. This booklet suggests that he should have had more comprehensive advice and a point of contact he can get in touch with. We have not been given any information, and if it wasn't for this site, we would be totally in the dark. Maybe need to be more assertive!

Thanks again, Diane