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?

@johnbishop

Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 – more information is available on the Foundation for Peripheral Neuropathy website here:
https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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Hi @barbarn. Did you note that just increasing my daily consumption of carbs, stopped the vertigo! I am prediabetic, so I severely limited my eating of carbs. Hope that works for you also. @gailfaith

Liked by barbarn

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@johnbishop

Greetings all my fellow Connect members suffering from PN,

I'm hoping today finds your pain not quite as bad or you are having no pain at all. Next week is Neuropathy Awareness Week Sunday, May 6 – Saturday, May 12, 2018 – more information is available on the Foundation for Peripheral Neuropathy website here:
https://www.foundationforpn.org/events/

Peripheral Neuropathy Video – Name it! Learn it! Cure it!
https://www.foundationforpn.org/living-well/fpn-media-center/pn-video-name-it-learn-it-cure-it/

If you have friends that wonder why you have pain, share and enlighten them.

John

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Well, I can't imagine not having one person come to help you when you fell!!! Are you in senior housing? or, maybe you're not even a senior…

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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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@jlsoerens

Mentor John suggested I post here. I've been dealing with Anti-MAG neuropathy for many years, but am now wondering if anyone has had any experience with stem cell therapy for neuropathy….curious if Mayo is using that therapy for neuro issues.

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Hi @jlsoerens — I'm tagging our Director Colleen @colleenyoung and one of our moderators Justin @JustinMcClanahan to see if they may be able to share any information about stem cell therapy at Mayo Clinic.
John

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@llhodnett

Hi Colleen. My Dad was just diagnosed with axonal sensitive motor polyneuropathy. He is 78 years old and has always been in great shape. He works out at a gym at least 3 times/week. He experienced sudden fatigue two weeks ago and pain in both legs (mostly in his calfs). He became so restless and did not sleep for an entire week. Doctors told him it was a virus and told us to wait it out. We took him to the emergency department 3 times in one week – once by ambulance and finally they admitted him. He has been in hospital for a week now and blood tests have revealed this diagnosis. At this point, he cannot stand. He says he cannot feel the floor. He can move his legs while lying in bed (up and down) and can move his ankles in a circular motion. His strength, however, has significantly declined. He is on his 3rd of 5 treatments of IVIG treatment. His physician told him today that if it works, she does not expect to see improvement for one to two weeks. She also said that if it does not work, there is no other treatment option. Can you or anyone else offer anything new on this condition? Thank you so much!

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Hi @llhodnett — welcome to Connect. I see that your post was addressed to Colleen but without her username tag she will not normally see a post unless she happens to see her name. By adding her Connect username @colleenyoung she will receive an email notification and be able to reply to your post.

I would like to thank you for being an advocate for your father. It's really important to be your own advocate or have someone like yourself advocating for you. I'm 75 and have idiopathic small fiber peripheral neuropathy but only have numbness in my legs and feet, no pain. I am tagging a few members who have discussed an IVIG in a post and may have information they can share with you. Please meet @bburleson1 @gratefulone @mllucas @mllucas @ginifuller @captnick @kdp3186 and @5134177246.

John

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@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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Hello John @juancs — welcome to Connect. Thank you for sharing your health story and background. It sounds like you have seen a lot of different doctors and specialists and you are doing a good job at being your own advocate. You mentioned that none of the doctors or specialists you've seen has been able to pin down a diagnosis. I'm not sure if it's a possibility for you but Mayo Clinic is really good at diagnosing hard to diagnose health related problems with their team of specialists approach. If you would like to seek help from Mayo Clinic, please call one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

https://www.mayoclinic.org/appointments

You might also be interested in a TED Talk – What happens when you have a disease doctors can't diagnose by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

John

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@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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Helpful thoughts, John, thanks; I am considering seeking appt with Mayo neurologist in Jax, but which one? (I have seen their roster; there seem to be several whose focus might relate, but maybe somebody at the clinic could review my case and direct me (?))

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@jlsoerens

Mentor John suggested I post here. I've been dealing with Anti-MAG neuropathy for many years, but am now wondering if anyone has had any experience with stem cell therapy for neuropathy….curious if Mayo is using that therapy for neuro issues.

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Thanks for the tag, John.
In this discussion, John and I both shared a variety of resources regarding neuropathy and stem cell therapy
– Stem Cell Therapy for Neuropathy https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

At Mayo Clinic neuroregeneration is a focus area of the Regenerative Medicine program. https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/neuroregeneration Scroll down the page and you can read clinical research being done specifically for peripheral nerve regeneration and repair.

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@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 John @juancs — is there a possibility that you can have one of your doctors contact Mayo Clinic Jacksonville on your behalf to setup an appointment? I'm not sure of the procedures but I'm tagging @colleenyoung our Director who may have a suggestion on how to go about setting up an appointment at the Mayo Clinic Florida location. Colleen do you have any suggestions for John @juancs ?

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@jlsoerens

Mentor John suggested I post here. I've been dealing with Anti-MAG neuropathy for many years, but am now wondering if anyone has had any experience with stem cell therapy for neuropathy….curious if Mayo is using that therapy for neuro issues.

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Thanks so much, John. You have been so helpful, and passed along lots of helpful information.

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@jlsoerens

Mentor John suggested I post here. I've been dealing with Anti-MAG neuropathy for many years, but am now wondering if anyone has had any experience with stem cell therapy for neuropathy….curious if Mayo is using that therapy for neuro issues.

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Thank you, Colleen. Your posts were informative and helpful….I’ll follow up.

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@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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Wow @sallymagint, your words are so amazingly inspiring… Because it’s so true…. You know something is wrong and you kind of feel like no one is listening to you and it’s all in your head. WOW so many people suffering in this world. Yet so many Doctors unless you’re in you death bed, feel like it’s just a small problem, without realizing how much it’s affecting your everyday lifestyle.

Liked by Dee, marystefy

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@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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Hello @nanaalways59 — welcome to Connect. I think you have expressed very well why a person needs to be their own advocate. I think the more we can communicate how we are feeling, what's going on with us and how it's affecting parts of our life, the better the doctor can diagnose and treat or refer us to a specialist. I think doctors can be overwhelmed at times and I'm not sure it's possible for a doctor to know everything that's going on with a patient unless they specialize in whatever ails you. I'm not a doctor and have no medical training or background but I really don't believe a person becomes a doctor without some sort of inner desire or drive to help people.

I have had several doctors that I thought could have done a better job helping me when I was younger by asking better questions for me to answer…but (yup, there's always a but ☺) looking back what if I would have asked more of my own questions. I think if I would have been a better advocate then, I may have gotten better treatments and helped with my diagnosis.

Keep asking questions!!

John

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Verrrry new to group chats, but hope to be a good member. I have had diabetes since age16, now 77, blessed to have been challenged early to accept it, live carefully and be open to alternative approaches. I am currently challenged to learn if improving blood flow will affect neuropathy in my legs that I have endured for many years thinking there was not much to help except healthy eating, B vitamins and Alpha Lypoic Acid and certainly not the drugs for pain. A recent article in Diabetes Forecast magazine gave me the idea that “improving blood flow” just might help prevent and maybe lessen severity of many diabetic complications but the “boot” they are working on would be some time away. I look forward to reading all of your offerings especially on stem cells.

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Since diagnosis I have been on insulin, using the pump since 2000. My diet has been quite careful for all that time gradually becoming more healthy after children were born, now even more strict, organic gardening, seldom red meat, farm fresh eggs,local markets for some things. I have endocrinologist checks every 3 months, current A1C, 5.9. Walk for exercise, but hip pain is keeping me from going very far.

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