Leg weakness with call/sll

[Buckster]

Hi all, I’m new to this blog. I was diagnosed a year ago with cell/all and I’m having weakness in my legs. They just seem to quit working at odd times. Is this normal?

[AussieNeil Administrator]

Hi and welcome to our community!

A community search: healthunlocked.com/search/p... shows posts about leg cramps and pain, but not weakness that I could see. It's certainly not something that I recall being raised before as due to CLL. Have you seen your doctor about this?

(Unfortunately you have submitted two posts on this topic and the duplicate wasn't picked up. (This happens sometimes and can be caused by a site bug.) There are some helpful replies on the second post here: healthunlocked.com/cllsuppo... )

[MsLockYourPosts Passed Volunteer]

Welcome! I'm assuming no treatment, as if you have had treatment you could be dealing with neuropathy. Have you also ruled out anemia? It would show as low hemoglobin on a CBC test.

I agree with Neil that your GP is probably where to start. There could be a number of causes. Don't make yourself crazy searching Dr. Google for answers ( been there done that). Some things to rule in or out would be issues related to the spine, joints, or nerves.

[Buckster in reply to MsLockYourPosts]

Thanks for the info. I’ll be seeing my MD on Thursday and will bring up the neuropathy issues. I do have diabetes too, so will explore this avenue as well.

[cllady01 Former Volunteer]

Sorry to hear of your situation. It has to be scary not to be able to trust your legs.

I would add to what Mslock has suggested, that diabetes be looked into for the possibility of neuropathy.

We do care and we are interested in your reporting something we have not heard of as related to CLL. We are not M.D.s, and have limited information related to your status with CLL.

Please let us know what you discover from your physician(s) which can put our concerns regarding you in order as well as educate all of our members, should it be discovered to be related to CLL.

[fish61]

I have had a similar problem , severe leg pain/ leg muscles ache in both legs , cardio guy says not vascular , neuro guy says not nerve , Rheumo guy says not his problem but I did have enlarged lymph nodes ( points to oncolo guy ( Dr Wierda )... he puts me on Gazyva and it shrinks the nodes in 2 months but the pain is not caused by CLL . Dr Wierda is at a loss ... all blood work is perfect but muscles leg still ache ... Dr Google has no idea !! Ana shows nucleolar , aldolase shows 11.7 , immune system is cattywampus ??? At a complete loss , Prednisone stops the pain in its tracks but side effects are scary. , so Rheumo guy has me on Gabapentine ,,, this medicine does not seem to be found the job ???? Next idea is a sports medicine guy and maybe look into cannabis?

[AdrianUK in reply to fish61]

Maybe you still have nodes? Or residual CLL cells. Gasyva is unlikely to produce a deep remission on its own. Maybe speak to a Cll expert about it? Also it may be you need to gently increase your physical activity to rebuild the muscles you have lost?

[fish61 in reply to AdrianUK]

thanks Adrian UK , but I was at MD Anderson yesterday and was told lymph nodes are 1/2 cm at best in a few places , CLL expert says not CLL causing the pain ... been exercising for a few months now and I am in decent muscular shape , they are. Just sore ?Going heavy on the Gabapentin starting today (300 mg 3 time a day , then up to 600 mg if that does not work ...

[AdrianUK in reply to fish61]

Mmm. Is it just that you’ve been over doing it on the exercise? Just a thought. My muscle pain is definitely related to how much exercise I do and anyone gets muscle pain if they do more exercise than they are used to... perhaps build in some rest days and see if that helps it? Just an idea.

[fish61 in reply to AdrianUK]

Thanks AdrianUK