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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

Gary, Alumni Mentor | @gman007 | Jun 26, 2018

Hello Nancy @banksnc49! I am a volunteer mentor like John and do have some neuropathy, but mine seems to be more autonomic and affects my digestive system more than hands and feet. I am afraid I don't have the kind of experience with symptoms as severe as you describe, but there are many members who keep this topic running regularly and I expect you will see some excellent suggestions. I know I can at least be supportive and hopefully learn from you. I am diabetic and it is entirely possible I will experience some peripheral N if I am here long enough with diabetes. Please keep us up to speed on how you are doing and I will keep watching for info about your foot pain and I am sort of a chronic surfer, so I will run across some things to share.
Blessings,
Gary

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Nancy Banks | @banksnc49 | Jun 26, 2018

Hi Gary. Thanks for your post. It sounds as though you’ve had some real struggles with your health. It’s great how you’ve overcome some big obstacles in your life so far. God bless. I look forward to sharing with you again.

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Nancy Banks | @banksnc49 | Jun 26, 2018
In reply to @banksnc49 "Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have..." + (show)
@banksnc49

Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have a really complicated health story so I won’t try to share it all. My kidneys failed about 9 yrs ago due to kidney stones destroying them. I was on dialysis for 5 yrs. I got a kidney transplant in November of 2014. The neuropathy started about 6 mos before my transplant. It was very severe. I cried every day and took 10 mgs of norco twice a day. It didn’t help. My pain dr suggested trying Interferential Therapy which is similar to a TENS unit but does more things. I used it for about 1 1/2 yrs and it helped tremendously. However, I still have pain in my feet. I’m down to 5 mgs of norco once a day so I’m thankful for that. I was considering acupuncture but I don’t know anyone who’s tried it. I’m hoping maying you all will have some other ideas to try. Thanks for letting me join and share my story.

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Hi John. Thanks for your response. I look forward to sharing information with others. Thanks for referring me to the kidney transplant people.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 26, 2018
In reply to @banksnc49 "Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have..." + (show)
@banksnc49

Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have a really complicated health story so I won’t try to share it all. My kidneys failed about 9 yrs ago due to kidney stones destroying them. I was on dialysis for 5 yrs. I got a kidney transplant in November of 2014. The neuropathy started about 6 mos before my transplant. It was very severe. I cried every day and took 10 mgs of norco twice a day. It didn’t help. My pain dr suggested trying Interferential Therapy which is similar to a TENS unit but does more things. I used it for about 1 1/2 yrs and it helped tremendously. However, I still have pain in my feet. I’m down to 5 mgs of norco once a day so I’m thankful for that. I was considering acupuncture but I don’t know anyone who’s tried it. I’m hoping maying you all will have some other ideas to try. Thanks for letting me join and share my story.

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@banksnc49, Hi, Nancy, I want to add my welcome to Mayo Clinic Connect. I do not have any experience with neuropathy. However, I am liver/kidney recipient (2009) and I am always honored to meet another kidney recipient. I volunteer as a mentor in the Transplant Discussion Group. I would like to extend a hand to you and ask you to visit the Transplant Discussion Group. There is a variety of interesting conversations happening there and I want you to know that you are welcome to read, and to join in anywhere. https://connect.mayoclinic.org/group/transplants/
I would be happy to join you there anytime. I look forward to hearing more of your transplant story.

I am not aware of any relationship between kidney failure (kidney stones) and neuropathy. Do you think that there is any connection?
Rosemary

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robertlclark | @robertlclark | Jun 27, 2018

Good morning all, I’ve posted here before and have been tolerating burning numbness in my left foot and left lower leg. My neopathy was caused by stenosis in my lower back. After two lumbar surgeries, I’m left with the neopathy in my left foot. I still have muscle strength so I can walk well but the pain is quite strong when walking or standing. I’ve had this problem for 10 years. I take Gabapentin at 2,000mg per day and use a topical OTC cream by MagniLife. I’ve also tried the large doseage of vitamins called “The Protocol”. Lately my burning pain has increased. Does anyone have a similar problem where the burning foot pain increases over time? I’m also wondering if the Gabapentin effectiveness decreases with time. If anyone can give me some feedback, I’d appreciate it. Thank you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 27, 2018
In reply to @juancs "I am 77 and married for 54 yrs, quite active and overall in pretty good health---however,..." + (show)
@juancs

I am 77 and married for 54 yrs, quite active and overall in pretty good health---however, I have had two cervical spinal discectomies (2001 and 2012) (there is some permanent scarring), and have a chronic nerve pain problem (burning or stinging-like, sometimes just aching) in the chest area (note that back and neck paid is not my problem), which radiates out, and there are neuropathies (e.g. hands); the discomfort is persistent but not constant---e.g. it is not there when I am sleeping and varies in intensity. Have seen a variety of neurologists and pain management specialists over the years plus have tried a variety of the usual pain pills; in addition, I have seen two acupuncturists and did an ayurvedic massage---none of that has worked. The pain problem has gradually gotten worse over the years, but nobody has been able to pinpoint either the cause or any helpful treatment. Cardiologist says my heart is OK---I do regular, including vigorous exercise, without any additional problem (do a lot of walking, hiking [did a 14er near Leadville last summer and a 5k run in Sept.], bicycling, swimming & some jogging). This pain does affect my quality of life, but although I am somewhat resigned to living with it, I would prefer to do better because it interrupts my routines. Have had MRI's periodically (last one about 2 yrs ago) but they never show significant additional deterioration of cervical spine. I am also still trying to find a neurologist who can help me---the last one had me try pills that didn't work and the prior one told me frankly that there was nothing that he could do for me. I am open to any suggestions as to a path forward. Thanks, John

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hi @juancs, my apologies for the late reply. If you contact Mayo Clinic, Jacksonville, they will review your case and recommend the best suited specialist. Keep in mind that all the specialists at Mayo Clinic work together as a team. While you will have a main point physician, care decisions are made as a team, this includes specialists at all 3 campuses. Here is the contact information for Mayo Clinic mayocl.in/1mtmR63

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 27, 2018
In reply to @banksnc49 "Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have..." + (show)
@banksnc49

Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have a really complicated health story so I won’t try to share it all. My kidneys failed about 9 yrs ago due to kidney stones destroying them. I was on dialysis for 5 yrs. I got a kidney transplant in November of 2014. The neuropathy started about 6 mos before my transplant. It was very severe. I cried every day and took 10 mgs of norco twice a day. It didn’t help. My pain dr suggested trying Interferential Therapy which is similar to a TENS unit but does more things. I used it for about 1 1/2 yrs and it helped tremendously. However, I still have pain in my feet. I’m down to 5 mgs of norco once a day so I’m thankful for that. I was considering acupuncture but I don’t know anyone who’s tried it. I’m hoping maying you all will have some other ideas to try. Thanks for letting me join and share my story.

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Hello Nancy @banksnc49

I would like to add my welcome as well. I am glad that you found Connect. While I have never experienced a transplant, I know a little about neuropathy and have tried some therapies to deal with it.

What types of physical therapy have you tried? Any other meds besides Norco?

I look forward to getting to know you better.

Teresa

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 27, 2018

If you live in the Minneapolis - St. Paul area, the Minnesota Neuropathy Association's (http://neuropathy-mn.org/) next meeting should be an interesting one. I'm hoping to attend.

Next Meeting:  Saturday, August 4th at 10 AM
Speaker: William Hoffman of the U of M Medical School
Topic: Stem Cells and Regenerative Medicine: A Revolution Picks Up the Pace

He will discuss what stem cells are and the diseases that cell therapies and regenerative medicine can treat emphasizing their potential for treating neurological disorders. He will review pluripotent (capable of differentiating into one of many cell types) and adult tissue stem cells currently in cell therapy clinical trials. Finally, he will talk about the growing marketplace of direct-to-consumer non-FDA-approved stem cell therapies in the U.S.

Meeting location: 
St. Michael's Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437

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4 replies
lucyholly18 | @lucyholly18 | Jun 27, 2018
In reply to @banksnc49 "Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have..." + (show)
@banksnc49

Hi. I’m Nancy Banks. I’ve been living with neuropathy for about 4 yrs now. I have a really complicated health story so I won’t try to share it all. My kidneys failed about 9 yrs ago due to kidney stones destroying them. I was on dialysis for 5 yrs. I got a kidney transplant in November of 2014. The neuropathy started about 6 mos before my transplant. It was very severe. I cried every day and took 10 mgs of norco twice a day. It didn’t help. My pain dr suggested trying Interferential Therapy which is similar to a TENS unit but does more things. I used it for about 1 1/2 yrs and it helped tremendously. However, I still have pain in my feet. I’m down to 5 mgs of norco once a day so I’m thankful for that. I was considering acupuncture but I don’t know anyone who’s tried it. I’m hoping maying you all will have some other ideas to try. Thanks for letting me join and share my story.

Jump to this post

My Indocrinologist Dr. Latif here in Memphis helped me more with my PN than any other Doctor ,he put me on Vits. . B12 Folbee,, and D,E after changing my diet no Carbs ,not packaged food ! I finally got my PN under control not burning in my feet 24/7 , I take Elavil at night for pain helps with sleep ,and only take a half of a Tramadol if I go shopping or on my feet for a few hrs. I elevate my feet when sitting down at home , Tumeric is also a great pain reliever you can put in your food or make hot drinks ! I personally make homemade soups and add it in my food !! But,can buy it in Pill form !!! Hope this helps!!

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axel | @axel | Jul 1, 2018

the side effects are only now appearing. Neuropathy pain in the left foot, only occasionally. What should I do about it ?

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