Living with Neuropathy - Welcome to the group

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?

@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

@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

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

@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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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!!

Liked by cehunt57

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

my hope is for a breakthrough in neuroregeneration to help my son with his cidp. Dear Doctors, medical researchers…keep at it. many depend on you.

have you or anyone heard of Stem Cell Therapy? Apparently there are US doctors, in patricular in Texas who are authorized to harvest your own fat cells after liposuction and get your own stem cells out of it the same day – these will then be applied IV or IT injection and may repair nerves and other tissues as well as it may reverse the demylielisation into remylielisationialisation damaged peripheral or central nerves, this may be the future of medicine as such as these injected stem cells can change into any type of needed cells.

@axel

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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Hello @axel, welcome to Connect. I'm glad you found us. Connect is a great place to ask questions and learn from others with similar health problems what they are doing for treatments.

Have you seen a doctor or a neurologist? Are you sure it's pain from neuropathy?

John

@swiss

have you or anyone heard of Stem Cell Therapy? Apparently there are US doctors, in patricular in Texas who are authorized to harvest your own fat cells after liposuction and get your own stem cells out of it the same day – these will then be applied IV or IT injection and may repair nerves and other tissues as well as it may reverse the demylielisation into remylielisationialisation damaged peripheral or central nerves, this may be the future of medicine as such as these injected stem cells can change into any type of needed cells.

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HI Felix @swiss, I'm hoping to learn a little more about stem cell therapy if I am able to make it to the August 4th Minnesota Neuropathy Association meeting. Their speaker from the University of Minnesota Medical School will be discussing some of the latest information (I hope).

I also feel it important to add it is so important to do your homework and due diligence when researching new treatment options. Stem cells offer a lot of hope. But where these is hope, there is hype and charlatans.
– FDA acts to remove unproven, potentially harmful treatment used in ‘stem cell’ centers targeting vulnerable patients https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573427.htm

You can read more about stem cells on the FDA’s website here: https://www.fda.gov/AboutFDA/Transparency/Basics/ucm194655.htm

Have you been doing anything new to help with your neuropathy?

John

@axel

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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Hello n good morning, yes I'm sure it is. Its been going on now for almost 20yrs. I,ve had 3nerve tests done over the yrs and I have myelinating nerves in my arms, reported back in 2015, early 2000's they said I had peripheral nerve damage and it was idiopathic. On top of that I've had 2 surgeries on my cervical spine. I had 4 discs collapse, now my latest MRI showed severe bone spurs at level c-3 and new lumbar issues as well. Thank you, John, I am always searching for support especially these days because the doctors will not give me anything for pain. I was on Gabapentin n it made me worse, very depressed and stupid. It also affected my eyesight and my hair is falling out. Not to mention I've gained 60lbs over the past 3.5 yrs. This past winter I just wanted to die so very much, my friend gave me some pain meds and now I've been taking them and at least I can move again. Though I still have a great deal of pain and can't do much, but at least I'm not confined to my bed or couch anymore all day. I can move. yeah!!!! Not to much though, because of the pinched nerves in my neck and back. Please know I've tried so many different drugs out there and the opioids are the only thing that help me. I think my nerve pain came from taking Viox n Bextra back in early 2000's those drugs were taken off the market, cause strokes, heart attacks n caused nerve pain, oh yeah the biggest of all people died from it.

GM, yes I've heard about stem cell therapy. However, I never research myself . I would try it for sure.

@johnbishop

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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@johnbishop John,

Are there videos of these meetings that would be available or slide presentations?

Teresa

@swiss

have you or anyone heard of Stem Cell Therapy? Apparently there are US doctors, in patricular in Texas who are authorized to harvest your own fat cells after liposuction and get your own stem cells out of it the same day – these will then be applied IV or IT injection and may repair nerves and other tissues as well as it may reverse the demylielisation into remylielisationialisation damaged peripheral or central nerves, this may be the future of medicine as such as these injected stem cells can change into any type of needed cells.

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Hi John. Do you know if the presentation from August 4 will be available online anywhere? I cannot attend but I would sure like to see the program or at least read about what was discussed. Thank you, Nancy Banks.

@sdemaria

GM, yes I've heard about stem cell therapy. However, I never research myself . I would try it for sure.

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I joined the http://www.foundationforpn.org and at the last check they said it was VERY expensive an s there is no proof that it works.

@swiss

have you or anyone heard of Stem Cell Therapy? Apparently there are US doctors, in patricular in Texas who are authorized to harvest your own fat cells after liposuction and get your own stem cells out of it the same day – these will then be applied IV or IT injection and may repair nerves and other tissues as well as it may reverse the demylielisation into remylielisationialisation damaged peripheral or central nerves, this may be the future of medicine as such as these injected stem cells can change into any type of needed cells.

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Hi Nancy @banksnc49 — Unfortunately they normally don't record their presentations. We sometimes get handouts or if someone takes good notes I post them on the website – http://neuropathy-mn.org/. I am hoping to go and will try to take notes. If I do and they have any handouts I will try to post the information here on Connect.

John

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