Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy group.

@maureenb

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.

Maureen

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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.

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@centre

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.

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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.

Maureen

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@maureenb

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.

Maureen

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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!

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@maureenb

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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Hi,
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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@kwfinnie

Hi,
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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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.

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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.

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@bonniebonnie

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.

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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?

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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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@drs22

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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I have stiffness and tightness in my ankles but I think mine may be from wearing compression socks and not my neuropathy. Does moving around or walking remove the stiffness for you?

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I have peripheral neuropathy in my feet. It started all of a sudden in May 2019, in my left foot only. A detail is that it did not start in my toes, rather it started in the entire front of my foot (arch forward) all at once and all of a sudden. One neurologist told me that sugar related neuropathy always starts in the toes.

The only symptom is numbness, I have no pain really, and not really any tingling. I also have no muscle control issues.

A year later, May 2020, I also got it in my right foot – same thing, forward part of right foot. The numbness is gradually getting worse, very slowly, but getting worse.

The only other symptom is that it is starting to hurt to stand on my feet – it feels like there is a lack of padding in the bottom of my feet.

It is worst when I first get out of bed and stand on my feet. It is best after a walk (I walk 2x day for an hour each). Also using a massage machine on the bottom of my feet almost takes the numbness away, temporarily. Something about walking and massaging makes it better. I do know that walking drops the blood sugar also. It "feels" like that would be a blood circulation problem, but my doctor says that is fine.

I have been to two neurologists and "idiopathic" (no known cause) is the word they use. One of them did one of those electrical tests and did not find any really cause although he did say some possible indication the back could be an issue, but he though not. I don't remember the details.

I can live with the way it is now, but I worry it will gradually get worse, perhaps to the point where I cannot walk? I am 64 years old.

There is no "smoking gun" cause, but these are factors that I thought could be a cause:

1. I have low B12, but I take B12 shots.

2. My blood sugar is a bit high, fasting glucose is around 104 (99 or less is standard), but A1C is in range at around 5.2-5.5 (4.3-5.8 is standard range). My primary doctor says this is not the issue, although one neurologist said even slightly high sugar can cause neuropathy. I am overweight, at 6-1 I am 220 and should be around 185.

3. My lower back has an issue, but people have looked at the MRI and do not see anything that would be causing this. A chiropractor I went to for a while thinks the issue is in my lower back, and suggested a doctor who might give me a cortisone shot there. But that doctor also looked at the MRI and did not think it would help, but said to come back later for a follow up. It might be worth doing for diagnostic if nothing else. The MRI is around 2 years old now so perhaps I should get another done, if I can.

4. I have very tight calves, but stretching those does not seem to help.

I really need to get the weight down to see it that somehow helps, working on that. 😉

Anyhow, if anyone has any thoughts, I would appreciate it.

Also, I don't feel like anyone I have been to has checked out all possible causes. I live in MA so wonder where the "best" place to go for this would be – MGH or other?

Thanks,

Rick

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@rickhood

I have peripheral neuropathy in my feet. It started all of a sudden in May 2019, in my left foot only. A detail is that it did not start in my toes, rather it started in the entire front of my foot (arch forward) all at once and all of a sudden. One neurologist told me that sugar related neuropathy always starts in the toes.

The only symptom is numbness, I have no pain really, and not really any tingling. I also have no muscle control issues.

A year later, May 2020, I also got it in my right foot – same thing, forward part of right foot. The numbness is gradually getting worse, very slowly, but getting worse.

The only other symptom is that it is starting to hurt to stand on my feet – it feels like there is a lack of padding in the bottom of my feet.

It is worst when I first get out of bed and stand on my feet. It is best after a walk (I walk 2x day for an hour each). Also using a massage machine on the bottom of my feet almost takes the numbness away, temporarily. Something about walking and massaging makes it better. I do know that walking drops the blood sugar also. It "feels" like that would be a blood circulation problem, but my doctor says that is fine.

I have been to two neurologists and "idiopathic" (no known cause) is the word they use. One of them did one of those electrical tests and did not find any really cause although he did say some possible indication the back could be an issue, but he though not. I don't remember the details.

I can live with the way it is now, but I worry it will gradually get worse, perhaps to the point where I cannot walk? I am 64 years old.

There is no "smoking gun" cause, but these are factors that I thought could be a cause:

1. I have low B12, but I take B12 shots.

2. My blood sugar is a bit high, fasting glucose is around 104 (99 or less is standard), but A1C is in range at around 5.2-5.5 (4.3-5.8 is standard range). My primary doctor says this is not the issue, although one neurologist said even slightly high sugar can cause neuropathy. I am overweight, at 6-1 I am 220 and should be around 185.

3. My lower back has an issue, but people have looked at the MRI and do not see anything that would be causing this. A chiropractor I went to for a while thinks the issue is in my lower back, and suggested a doctor who might give me a cortisone shot there. But that doctor also looked at the MRI and did not think it would help, but said to come back later for a follow up. It might be worth doing for diagnostic if nothing else. The MRI is around 2 years old now so perhaps I should get another done, if I can.

4. I have very tight calves, but stretching those does not seem to help.

I really need to get the weight down to see it that somehow helps, working on that. 😉

Anyhow, if anyone has any thoughts, I would appreciate it.

Also, I don't feel like anyone I have been to has checked out all possible causes. I live in MA so wonder where the "best" place to go for this would be – MGH or other?

Thanks,

Rick

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Hi Rick @rickhood, Reading your story kind of feels little like my own story. My wife always told me I walked like an old man even when I was in my 50s and thinking I was still young which is when I first noticed my neuropathy numbness 🙃. Now in my late 70s, I still have the numbness but am still doing relatively OK. I posted my story in the Member Neuropathy Journey Stories: What's Yours? discussion here https://connect.mayoclinic.org/comment/310341/.

My diagnosis in 2016 through the Rochester Mayo Clinic neurologist was idiopathic small fiber peripheral neuropathy but since I also have no pain and just the numbness I wasn't too happy being told that there are no real answers or treatments to help with numbness. This was what brought me to Connect. If I wasn't confident in my diagnosis, I think I might try seeking help at a major teaching hospital or health facility like MGH or Mayo.

I've been overweight most of my adult life until the past few years when I got serious and knew I had to make some changes. I've also been told by all of my primary care docs that I have prediabetes. Really didn't believe them but I have started seeing the light a little more after doing some research into the Metabolic Syndrome. Here are some references if you want to do a little digging.

— Diagnosis and Management of the Metabolic Syndrome: https://www.ahajournals.org/doi/10.1161/circulationaha.105.169404
— The metabolic syndrome – What is it and how should it be managed?:
https://journals.sagepub.com/doi/full/10.1177/2047487319886404
— A comprehensive definition for metabolic syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675814/
— The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
— Metabolic syndrome as a risk factor for neurological disorders: https://pubmed.ncbi.nlm.nih.gov/21997383/

Since you mentioned you are also working on your weight which I think is an important piece of the puzzle, you might also want to join in the following discussion.
— Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

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@johnbishop

I have stiffness and tightness in my ankles but I think mine may be from wearing compression socks and not my neuropathy. Does moving around or walking remove the stiffness for you?

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I have severe stiffness in my ankles and feet now, and virtually total loss of sensation. This makes walking and balance very difficult now. Does anyone else also have that dreadful feeling of weariness when you try to walk? I really find it impossible now to walk any distance at all. However, I am 82, so am never sure if old age is a factor. I use a mobility scooter to be able to take our dog on walks, so I still get plenty of fresh air. I relate also to not being safe on uneven surfaces, cobbled surfaces are a total nightmare.

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