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rabbit10 (@rabbit10)

Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: 2 hours ago | Replies (2527)

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Hi. I am new to this group. I have been diagnosed with Mantle Cell Lymphoma, Kidney disease and peripheral neuropathy.

In June, 2021 I was diagnosed with stage 3 Kidney Disease. I don't have any of the risk factors like diabetes and high blood pressure and I don't smoke or drink. All my tests done by my Nephrologist came back normal, so the cause was never determined. Even though my oncologist and nephrologist say it isn't a know side effect of Calquence (a preventive medication for my Mantle Cell Lymphoma) my kidney function started to decline when I started on this medication.

In August, 2021, I was diagnosed with peripheral neuropathy. I have slight numbness and burning in my hands and get intermittent tingling in my arms. My feet are worst than my hands. My neurologist did a electromyography test and said my muscle nerves in my feet where normal but he got zero readings from my sensory nerves in both my feet. He ordered blood work to check for certain medical conditions and so far I don't see anything of significance in the results (which I read online). However, I haven't talked to my Neurologist yet about the results. I have a feeling I will be told I have idiopathic neuropathy, meaning no known cause.

I was reading that a lot of people that have CKD (chronic kidney disease) also get neuropathy due to protein not being fully eliminated in their body.

Has anyone else been diagnosed with both CKD and neuropathy?

Thanks for any information you can give me on this.

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Replies to "Hi. I am new to this group. I have been diagnosed with Mantle Cell Lymphoma, Kidney..."

Hello Maureen @maureenb, Welcome to Connect. I did a search of Connect and wasn't able to find any members who posted about chronic kidney disease and neuropathy but I have a feeling there are members that have both conditions and may be able to share their experiences with you. I was able to find a couple of references that might be helpful.

— Chronic kidney disease as a risk factor for peripheral nerve impairment in older adults: A longitudinal analysis of Health, Aging and Body Composition (Health ABC) study: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0242406
— Neurological complications in chronic kidney disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102165/

Have you discussed your thoughts about protein and CKD with your doctor to see if they might have some thoughts or suggestions?

Has anyone experienced neuropathy caused by an autoimmune disease? Also does anyone know what treatments Johns Hopkins has to offer? Thanks. Kathy

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