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.
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.
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.
Thank you John for your reply and the links you posted. I will take a look at the information.
I have an appointment with my nephrologist on Feb 1st and my neurologist on Feb 4th. I will be asking them both if there is a connection between my CKD and my peripheral neuropathy. I will post if I find out anything interesting as it my be helpful to other people.
Thank you John for your reply and the links you posted. I will take a look at the information.
I have an appointment with my nephrologist on Feb 1st and my neurologist on Feb 4th. I will be asking them both if there is a connection between my CKD and my peripheral neuropathy. I will post if I find out anything interesting as it my be helpful to other people.
Hi- just want to chime in that where you have sensory changes but not muscle nerve changes in your legs and feet, I really, really recommend asking your PCP for a PT referral for “Eval and Treat” and ask the PT to set you up with a Home Exercise Program for strengthening, balance, and walking. My experience is that it feels so weird when up and about on your feet, that you start doing less and less and you WILL lose muscle strength which will affect your mobility and endurance. I also find that doing the daily home program helps me structure my day and helps me keep my “fright” about having PN in check, reading John and the other volunteers calm comments really helps, and reading the PN foundation site info helps- all by reminding me that I am working on this unwelcome diagnosis in a positive way.
Hi- just want to chime in that where you have sensory changes but not muscle nerve changes in your legs and feet, I really, really recommend asking your PCP for a PT referral for “Eval and Treat” and ask the PT to set you up with a Home Exercise Program for strengthening, balance, and walking. My experience is that it feels so weird when up and about on your feet, that you start doing less and less and you WILL lose muscle strength which will affect your mobility and endurance. I also find that doing the daily home program helps me structure my day and helps me keep my “fright” about having PN in check, reading John and the other volunteers calm comments really helps, and reading the PN foundation site info helps- all by reminding me that I am working on this unwelcome diagnosis in a positive way.
Thank you for your response. I couldn't agree with you more on keeping active. Before the pandemic I played pickle ball twice a week, did Tai Chi once a week and rode by bike. Like all of us things changed a few years ago. Now, me and U-tube exercise together, I do weight exercises (not more than 8 lbs as I am a light weight), do 20 minutes of walking cardio and practice my Tai chi, In nice weather my husband and I still went on bike trips, but right now that is out of the question as we don't have snow tires on our bikes....lol
I was getting into a pretty good daily routine with my actives. However, things kept happening to me that prevented me from exercising, but once I got better, I would rebuild myself back up again. It can take awhile to get motivated again, but I would eventually get back into my routine. At the beginning of Dec I had squamous cells below my eye and had MOE'S surgery to remove it and they had to do a skin graft. I was unable to lift anything heavy or bend over for several weeks. I have to admit that each time I have to stop my exercises it takes me longer to get going again. I could have started doing my exercises again about a week earlier than I did, but I will blame it on Christmas 🙂
After Christmas was over I couldn't procrastinate any longer. Being 69 my balance isn't like it was when I was 30 but still pretty good. Tai Chi has a lot of moves that require balance and I was able to do them. That is one reason I noticed that the neuropathy in my feet was making my balance bad, because I was having trouble doing those moves. Now, when I do Tai Chi I have to concentrate a lot harder to do the balancing. It isn't like it used to be but I think the Tai Chi is helping my stability get a little better.
Good grief.....I wasn't planning on writing so much and I am sure it is more than anyone wanted to know. Anyways, thank you for reminding me of the importance of staying active and even though I have started my routine again you did give me more motivation to up my game and keep moving forward, doing the best I can do.
Thank you for your response. I couldn't agree with you more on keeping active. Before the pandemic I played pickle ball twice a week, did Tai Chi once a week and rode by bike. Like all of us things changed a few years ago. Now, me and U-tube exercise together, I do weight exercises (not more than 8 lbs as I am a light weight), do 20 minutes of walking cardio and practice my Tai chi, In nice weather my husband and I still went on bike trips, but right now that is out of the question as we don't have snow tires on our bikes....lol
I was getting into a pretty good daily routine with my actives. However, things kept happening to me that prevented me from exercising, but once I got better, I would rebuild myself back up again. It can take awhile to get motivated again, but I would eventually get back into my routine. At the beginning of Dec I had squamous cells below my eye and had MOE'S surgery to remove it and they had to do a skin graft. I was unable to lift anything heavy or bend over for several weeks. I have to admit that each time I have to stop my exercises it takes me longer to get going again. I could have started doing my exercises again about a week earlier than I did, but I will blame it on Christmas 🙂
After Christmas was over I couldn't procrastinate any longer. Being 69 my balance isn't like it was when I was 30 but still pretty good. Tai Chi has a lot of moves that require balance and I was able to do them. That is one reason I noticed that the neuropathy in my feet was making my balance bad, because I was having trouble doing those moves. Now, when I do Tai Chi I have to concentrate a lot harder to do the balancing. It isn't like it used to be but I think the Tai Chi is helping my stability get a little better.
Good grief.....I wasn't planning on writing so much and I am sure it is more than anyone wanted to know. Anyways, thank you for reminding me of the importance of staying active and even though I have started my routine again you did give me more motivation to up my game and keep moving forward, doing the best I can do.
Hi Maureen- one of the hardest parts of PN for me is acknowledging, accepting, and choosing to work with my “new normal”. I’m 69 too and was very physically active. My balance has been affected so that I’m not safe on uneven surfaces (no more gardening in the flower beds or rock garden), I have difficulty moving backwards (no more games of badminton (can’t imagine pickle ball). I couldn’t ride a bike as my foot would slide off the pedal without me realizing it, but with ankle exercises and watching, I can ride on flat surfaces safely. I used to walk 4 miles 6/7 days a week, but the PN has affected the alignment of my ankle and knee, so I must keep walking to about a mile or my knee starts to hurt. I used to swim laps- 2 miles twice a week, but the flutter kick makes my leg pain go into the atmosphere, so I do swim-walking. My mantra is “I’m walking, I’m talking” and to try to be always grateful for the positive- helps keep things in perspective because you have this image of yourself and your physical capacity and it just isn’t that way anymore and won’t be again. Hard to face, but you are still you and you will be great!
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.
All of my doctors have said "likely autoimmune" but no one knows for sure. There are no obvious causes, that's for sure. It could have been a stressful event that started the cascade of symptoms, but again, no obvious cause with me. I do have other autoimmune conditions (hypothyroid and CVID) so it would make sense that my autonomic neuropathy and SFN have some sort of correlation/causation.
My brother has it and homeopathy helped considerably at the beginning. He has incurable bone cancer and the chemo etc seems to have made it impossible to remedy.
My brother has it and homeopathy helped considerably at the beginning. He has incurable bone cancer and the chemo etc seems to have made it impossible to remedy.
Hello @bonniebonnie, Welcome to Connect. So sorry to hear that your brother has neuropathy from his cancer treatments. You mentioned homeopathy helped at first but it doesn't sound like it is helping anymore. The Foundation for Peripheral Neuropahy has some complementary and alternative therapies listed on their website here - https://www.foundationforpn.org/treatments/.
Has your brother tried any other alternative or complementary therapies to help with the neuropathy from chemo?
I have PN from my toes to my knees. I try to stay active like others mentioned above. Lately, I have found that my ankles are becoming very stiff and I feel tightness in my midfoot as well. I had ankle fusions on both feet a few years ago but my ankles feel stiffer than they did when I first got out of a cast. I was just curious if others with PN had stiffness in their ankle and/or tightness in the midfoot. Thanks.
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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?
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2 ReactionsThank you John for your reply and the links you posted. I will take a look at the information.
I have an appointment with my nephrologist on Feb 1st and my neurologist on Feb 4th. I will be asking them both if there is a connection between my CKD and my peripheral neuropathy. I will post if I find out anything interesting as it my be helpful to other people.
Maureen
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2 ReactionsHi- just want to chime in that where you have sensory changes but not muscle nerve changes in your legs and feet, I really, really recommend asking your PCP for a PT referral for “Eval and Treat” and ask the PT to set you up with a Home Exercise Program for strengthening, balance, and walking. My experience is that it feels so weird when up and about on your feet, that you start doing less and less and you WILL lose muscle strength which will affect your mobility and endurance. I also find that doing the daily home program helps me structure my day and helps me keep my “fright” about having PN in check, reading John and the other volunteers calm comments really helps, and reading the PN foundation site info helps- all by reminding me that I am working on this unwelcome diagnosis in a positive way.
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Helpful -
Hug
3 ReactionsThank you for your response. I couldn't agree with you more on keeping active. Before the pandemic I played pickle ball twice a week, did Tai Chi once a week and rode by bike. Like all of us things changed a few years ago. Now, me and U-tube exercise together, I do weight exercises (not more than 8 lbs as I am a light weight), do 20 minutes of walking cardio and practice my Tai chi, In nice weather my husband and I still went on bike trips, but right now that is out of the question as we don't have snow tires on our bikes....lol
I was getting into a pretty good daily routine with my actives. However, things kept happening to me that prevented me from exercising, but once I got better, I would rebuild myself back up again. It can take awhile to get motivated again, but I would eventually get back into my routine. At the beginning of Dec I had squamous cells below my eye and had MOE'S surgery to remove it and they had to do a skin graft. I was unable to lift anything heavy or bend over for several weeks. I have to admit that each time I have to stop my exercises it takes me longer to get going again. I could have started doing my exercises again about a week earlier than I did, but I will blame it on Christmas 🙂
After Christmas was over I couldn't procrastinate any longer. Being 69 my balance isn't like it was when I was 30 but still pretty good. Tai Chi has a lot of moves that require balance and I was able to do them. That is one reason I noticed that the neuropathy in my feet was making my balance bad, because I was having trouble doing those moves. Now, when I do Tai Chi I have to concentrate a lot harder to do the balancing. It isn't like it used to be but I think the Tai Chi is helping my stability get a little better.
Good grief.....I wasn't planning on writing so much and I am sure it is more than anyone wanted to know. Anyways, thank you for reminding me of the importance of staying active and even though I have started my routine again you did give me more motivation to up my game and keep moving forward, doing the best I can do.
Maureen
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Helpful -
Hug
3 ReactionsHi Maureen- one of the hardest parts of PN for me is acknowledging, accepting, and choosing to work with my “new normal”. I’m 69 too and was very physically active. My balance has been affected so that I’m not safe on uneven surfaces (no more gardening in the flower beds or rock garden), I have difficulty moving backwards (no more games of badminton (can’t imagine pickle ball). I couldn’t ride a bike as my foot would slide off the pedal without me realizing it, but with ankle exercises and watching, I can ride on flat surfaces safely. I used to walk 4 miles 6/7 days a week, but the PN has affected the alignment of my ankle and knee, so I must keep walking to about a mile or my knee starts to hurt. I used to swim laps- 2 miles twice a week, but the flutter kick makes my leg pain go into the atmosphere, so I do swim-walking. My mantra is “I’m walking, I’m talking” and to try to be always grateful for the positive- helps keep things in perspective because you have this image of yourself and your physical capacity and it just isn’t that way anymore and won’t be again. Hard to face, but you are still you and you will be great!
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Helpful -
Hug
3 ReactionsHi,
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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1 ReactionAll of my doctors have said "likely autoimmune" but no one knows for sure. There are no obvious causes, that's for sure. It could have been a stressful event that started the cascade of symptoms, but again, no obvious cause with me. I do have other autoimmune conditions (hypothyroid and CVID) so it would make sense that my autonomic neuropathy and SFN have some sort of correlation/causation.
My brother has it and homeopathy helped considerably at the beginning. He has incurable bone cancer and the chemo etc seems to have made it impossible to remedy.
Hello @bonniebonnie, Welcome to Connect. So sorry to hear that your brother has neuropathy from his cancer treatments. You mentioned homeopathy helped at first but it doesn't sound like it is helping anymore. The Foundation for Peripheral Neuropahy has some complementary and alternative therapies listed on their website here - https://www.foundationforpn.org/treatments/.
Has your brother tried any other alternative or complementary therapies to help with the neuropathy from chemo?
I have PN from my toes to my knees. I try to stay active like others mentioned above. Lately, I have found that my ankles are becoming very stiff and I feel tightness in my midfoot as well. I had ankle fusions on both feet a few years ago but my ankles feel stiffer than they did when I first got out of a cast. I was just curious if others with PN had stiffness in their ankle and/or tightness in the midfoot. Thanks.