Tingling Legs and CLL

[Glandore2021]

Recently diagnosed on watch and wait and my legs have been tingling from knees down for approx 6 weeks now. Uncertain if this is due to the second pfizer vaccine (12 wks ago), anxiety or CLL. Am interested to hear other people's views/experiences on this.

[lankisterguy Volunteer]

Hi Glandore2021,

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It might be peripheral neuropathy, common among CLL patients that had Chemotherapy in the past. If you are untreated for CLL, but have had shingles, it can happen, but if no other history it is less common. - mayoclinic.org/diseases-con....

Weakness, numbness, and pain from nerve damage, usually in the hands and feet.

A common cause of peripheral neuropathy is diabetes, but it can also result from injuries, infections, and exposure to toxins.

Symptoms include pain, a pins-and-needles sensation, numbness, and weakness.

Treatments include antidepressants like amitriptyline, pain medications like oxycodone, anti-seizure medications, and pain-relieving creams. It's also important to treat the underlying condition.

Very common

More than 3 million US cases per year

Treatment can help, but this condition can't be cured

Requires a medical diagnosis

Lab tests or imaging often required

Chronic: can last for years or be lifelong

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Here is a list of the 120 times peripheral neuropathy was mentioned in previous posts.

healthunlocked.com/cllsuppo...

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Suggest you talk to your CLL expert and a ortho neuro specialist to make certain it is not a spinal nerve pinch

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Len

[Glandore2021 in reply to lankisterguy]

Tks Len. Will get it checked out. Always fear the worst when you don't know what it is.

[uptheirons in reply to lankisterguy]

Hi Glandore, I have CLL and was having issues with numbness and tingling in my legs. I was sent to see a neurologist who carried out electro conduction type tests.

Anyhow his report stated that in his opinion the numbness and tingling was been caused by the CLL.

I’ve since started treatment for the CLL and have been on Ibrutinib for the last 3 months.

The episodes while less frequent are still there but they hope they will stop completely after another few cycles of the treatment.

Take care

[Lu05 in reply to uptheirons]

I experienced the same feeling down my legs and I have CLL which had progressed to needing treatment on July 7th.

[Glandore2021 in reply to Lu05]

Hi Lu. Thanks for the response. This sensation was happening when I saw the consultant on my initial consultation. I have just been diagnosed with CLL, am on watch and wait. My next consultation is in 6 months so I presume I am OK until then. Hope the the treatment is going well for you?

[Lu05 in reply to Glandore2021]

It seems to be doing what it should be doing so that’s good. Wbc went from 200 to 25 and dropping x water intake seems to be the most important thing to do x

[MaxSmart in reply to lankisterguy]

Len! It’s amazing that you can answer my question better than my CLL expert. I’ve been having peripheral neuropathy for two years. You outlined my profile perfectly as I’ve had both chemo and shingles. I wish my oncologist knew what you know.

[LeoPa]

I had something similar a few years before the diagnosis of my hcmbl. Not only in my legs but down my spine too. And it happened already during the eating healthy and training like a pro period of mine. I used to be drinking a certain brand of strong coffee during that time. I decided to leave the coffee alone for a few days and miraculously these things went away. I changed brands and reduced my coffee intake, no more problems.

[Glandore2021 in reply to LeoPa]

Interesting Leo. Am similar age and partake in rigorous exercise 3 or 4 times a week. Drink strong coffee each morning but I will stop drinking for the new few days to see if this has any effect. Thanks for the response.

[SlowCLL in reply to Glandore2021]

Please let us know whether stopping coffee helps.Owen

[Glandore2021 in reply to SlowCLL]

Will do. Cheers Leo

[MaxSmart in reply to LeoPa]

Me too! I have this tingling/numbness in my feet in. Let’s all do an experiment, drink less coffee and see if our symptoms improve.

[Eucalyptus22]

I have numbness below each knee and since starting treatment with Acalabrutinib get a bubbling sensation in my legs. At the moment trying to work out what is causing it. Never thought it was just part of CLL but maybe it is.

[Glandore2021 in reply to Eucalyptus22]

Maybe it is. It's an uncomfortable sensation, particularly when you're uncertain as to the cause. Hope the treatment is going well?

[marcyh]

About a month post 2nd Pfizer, my husband developed a zoster like blistering rash that was spreading rapidly. He's never had chicken pox. He had no pain or itching and it was random on his body, no pattern. Atypical, but doctors treated it as shingles. The valacyclovir stopped the spread but the nerve damage appeared with heightened skin sensitivity and stiffness. That continues. I know of others who believe they had a nerve reaction to Pfizer, or an old nerve problem was triggered.I have peripheral neuropathy with tingling and numbness in my feet and legs thought to be due to Sjogren's Syndrome. It started with zaps in my toes.

marcyh

[MaxSmart in reply to marcyh]

that’s really interesting. Thanks for sharing.