Living with Neuropathy - Welcome to the group

Posted by Colleen Young @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?

Hi,

I'm not sure where exactly to put this post, but going to "Home" on websites always works so I will post it here. In the last two years I have had rapidly progressing immune mediated PN affect almost every part of my body. Despite IVIG, Chemo, diets, acupuncture, supplements, Chinese herbs, a Lakota Sioux healing ceremony followed by a special tea, I have yet to stop the neuropathy from progressing (IVIG and chemo have gotten rid of some symptoms).

I would be extremely interested in forming a group of people with severe and/or rapidly progressing neuropathy that meets on-line, say monthly, and chat's about issues related to the illness. It could be "have you tried this pain relief method?" "Is there anyway to get rid of this pain?cramping/numbness?" or "Boy my life has changed." We can decide if we want to use a chat format, or have Skype or other internet calls.

If anyone is interested please private message me.

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@derrygirl

Can you tell me what CBD oil brand and strength you use. thanks, I need some relief.

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I am so sorry you are going through this. i don't get my CBD over the counter. I have a grower in the family who makes it for me. I don't even know what the strength is. I wish I could be of more help.

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@arcticmark

Hi,

I'm not sure where exactly to put this post, but going to "Home" on websites always works so I will post it here. In the last two years I have had rapidly progressing immune mediated PN affect almost every part of my body. Despite IVIG, Chemo, diets, acupuncture, supplements, Chinese herbs, a Lakota Sioux healing ceremony followed by a special tea, I have yet to stop the neuropathy from progressing (IVIG and chemo have gotten rid of some symptoms).

I would be extremely interested in forming a group of people with severe and/or rapidly progressing neuropathy that meets on-line, say monthly, and chat's about issues related to the illness. It could be "have you tried this pain relief method?" "Is there anyway to get rid of this pain?cramping/numbness?" or "Boy my life has changed." We can decide if we want to use a chat format, or have Skype or other internet calls.

If anyone is interested please private message me.

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Hello @arcticmark. If I may ask, are your replying to messages primarily by email on Connect? If so, may I suggest clicking on VIEW & REPLY. Connect is an online community where members post back and forth to one-another, so in a sense, they are already meeting online to chat. The various discussion topics you mentioned could be separate topics, but may also already exist in the Neuropathy group, https://connect.mayoclinic.org/group/neuropathy/. You may also notice that I changed your post to remove your email. This is done to protect your privacy as Mayo Clinic Connect is a public site and sharing your email could open you up to potential spammers.

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@arcticmark

Hi,

I'm not sure where exactly to put this post, but going to "Home" on websites always works so I will post it here. In the last two years I have had rapidly progressing immune mediated PN affect almost every part of my body. Despite IVIG, Chemo, diets, acupuncture, supplements, Chinese herbs, a Lakota Sioux healing ceremony followed by a special tea, I have yet to stop the neuropathy from progressing (IVIG and chemo have gotten rid of some symptoms).

I would be extremely interested in forming a group of people with severe and/or rapidly progressing neuropathy that meets on-line, say monthly, and chat's about issues related to the illness. It could be "have you tried this pain relief method?" "Is there anyway to get rid of this pain?cramping/numbness?" or "Boy my life has changed." We can decide if we want to use a chat format, or have Skype or other internet calls.

If anyone is interested please private message me.

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Hi.
I’m also looking for PN relief. I’m not sure how to get a group or talk time started, but I can suggest you research Mayofascial Release Therapy, or MFR. I’ve had bad neuropathy in my feet from a couple of failed back surgeries and developed CRPS which started this pain.
I’ve had 4 MFR treatments and it has given me a new lease on my life with 75-85 percent reduction in my pain. My pain started to go away after the first treatment!
Then you do self treatments on your own to help heal what ails. You have to put time in to get positive results.
It might not work for everyone but when I read about this on this discussion group, I soon tried the therapy and I go once a week and feel better after each session.
Good luck with this and your other suggestions on this post.

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@mlross4508

Hi.
I’m also looking for PN relief. I’m not sure how to get a group or talk time started, but I can suggest you research Mayofascial Release Therapy, or MFR. I’ve had bad neuropathy in my feet from a couple of failed back surgeries and developed CRPS which started this pain.
I’ve had 4 MFR treatments and it has given me a new lease on my life with 75-85 percent reduction in my pain. My pain started to go away after the first treatment!
Then you do self treatments on your own to help heal what ails. You have to put time in to get positive results.
It might not work for everyone but when I read about this on this discussion group, I soon tried the therapy and I go once a week and feel better after each session.
Good luck with this and your other suggestions on this post.

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@articmark and mlross4508 there is a Myofascial Release Therapy (MFR) discussion on Connect that you may want to join in here:

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@JustinMcClanahan

Hello @arcticmark. If I may ask, are your replying to messages primarily by email on Connect? If so, may I suggest clicking on VIEW & REPLY. Connect is an online community where members post back and forth to one-another, so in a sense, they are already meeting online to chat. The various discussion topics you mentioned could be separate topics, but may also already exist in the Neuropathy group, https://connect.mayoclinic.org/group/neuropathy/. You may also notice that I changed your post to remove your email. This is done to protect your privacy as Mayo Clinic Connect is a public site and sharing your email could open you up to potential spammers.

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Hi Justin,

My apologies if I suggested something other than what you normally do on Mayo connect. Every once in a while someone posts about say IVIG and a number of experienced people give their thoughts and then the conversation dies. What I'm trying to do and happy to do through Mayo connect is trying to find people who are going through something somewhat similar to me so we could have a chat periodically like a chat group.

I have gone from traveling the world to being confined mostly to my house or in the heat wave we are having three rooms due to my neuropathy making it so I can't sweat. I have pain all of the time in my feet, legs, back, hands forearms, face, teeth, head and am losing my lower tone hearing (higher tone is normal from loud music). My PN has make it so I walk like a zombie and my hands are getting harder to use as they cramp up.

I would like to have a discussion with some people going through something similar and go "Wow! this is hard;" "This has made me disabled in a matter of 12 months, it's a big change;" or "I have to change how I interact with my friends and my wife because I can't do the things we used to do."

These topics take a sense of privacy and getting to know people. Any idea where I can find such a group?

Many thanks!

Mark

REPLY
@arcticmark

Hi Justin,

My apologies if I suggested something other than what you normally do on Mayo connect. Every once in a while someone posts about say IVIG and a number of experienced people give their thoughts and then the conversation dies. What I'm trying to do and happy to do through Mayo connect is trying to find people who are going through something somewhat similar to me so we could have a chat periodically like a chat group.

I have gone from traveling the world to being confined mostly to my house or in the heat wave we are having three rooms due to my neuropathy making it so I can't sweat. I have pain all of the time in my feet, legs, back, hands forearms, face, teeth, head and am losing my lower tone hearing (higher tone is normal from loud music). My PN has make it so I walk like a zombie and my hands are getting harder to use as they cramp up.

I would like to have a discussion with some people going through something similar and go "Wow! this is hard;" "This has made me disabled in a matter of 12 months, it's a big change;" or "I have to change how I interact with my friends and my wife because I can't do the things we used to do."

These topics take a sense of privacy and getting to know people. Any idea where I can find such a group?

Many thanks!

Mark

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Hi Mark @arcticmark, I think you can post a message asking members who would like to participate to send you a private message by clicking on your member name and going to your profile and select Send Private Message. That way you could trade email addresses and start your own blog/support group. Have you seen this site? https://www.patientslikeme.com/patients/searches/detail_search

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@arcticmark

Hi Justin,

My apologies if I suggested something other than what you normally do on Mayo connect. Every once in a while someone posts about say IVIG and a number of experienced people give their thoughts and then the conversation dies. What I'm trying to do and happy to do through Mayo connect is trying to find people who are going through something somewhat similar to me so we could have a chat periodically like a chat group.

I have gone from traveling the world to being confined mostly to my house or in the heat wave we are having three rooms due to my neuropathy making it so I can't sweat. I have pain all of the time in my feet, legs, back, hands forearms, face, teeth, head and am losing my lower tone hearing (higher tone is normal from loud music). My PN has make it so I walk like a zombie and my hands are getting harder to use as they cramp up.

I would like to have a discussion with some people going through something similar and go "Wow! this is hard;" "This has made me disabled in a matter of 12 months, it's a big change;" or "I have to change how I interact with my friends and my wife because I can't do the things we used to do."

These topics take a sense of privacy and getting to know people. Any idea where I can find such a group?

Many thanks!

Mark

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I’m there with you! Very very hard. One time got out of my car had a 90 year old look at me they thought I was intoxicated. Looked like they were going to call the police on me. No I wasn’t.!!! I have no balance and I was trying to walk on my feet when I can’t feel them. I know they are there because I feel extreme pain that’s it! Arm’s and hand’s worse. Head, Feels like I’m wearing a hat I can’t take off the hat and my Head is always itching. Hard to keep my head up it’s so heavy etc…you found the group.

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@etipton9756

I was diagnosed 20 years ago and was put immediately on Neurontin (Gabapentin). I titrated up to 6X300 mg capsules nightly and have followed that successfully since. Now my MD has 'lost' his knowledge of the prescription and cannot find empirical evidence that Neurontin is appropriate for Per Neur. Does anybody know of a licensed specialist in Minnesota that can advise him? My original guy was a neurologist who later retired and died.

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Hello @etipton9756, Welcome to Connect. There is another discussion where your question will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where you can meet other members using Gabapentin to treat their neuropathic pain.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I'm not familiar with Per Neur. Are you referring to peripheral neuropathy? Can you call your healthcare provider or primary care doctor to see if they can give you a referral for a neurologist?

Here's a search tool for finding a neurologist in your area on the Foundation for Peripheral Neuropathy's website:
https://www.foundationforpn.org/living-well/neurologist-directory/

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@etipton9756

I was diagnosed 20 years ago and was put immediately on Neurontin (Gabapentin). I titrated up to 6X300 mg capsules nightly and have followed that successfully since. Now my MD has 'lost' his knowledge of the prescription and cannot find empirical evidence that Neurontin is appropriate for Per Neur. Does anybody know of a licensed specialist in Minnesota that can advise him? My original guy was a neurologist who later retired and died.

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@etipton9756
What kind of information are you looking for?
Like John mentioned, are you referring to Neuropathy or do you have a Seizure disorder or are you taking it for back or other pain issues?
Jake

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I was diagnosed 20 years ago and was put immediately on Neurontin (Gabapentin). I titrated up to 6X300 mg capsules nightly and have followed that successfully since. Now my MD has 'lost' his knowledge of the prescription and cannot find empirical evidence that Neurontin is appropriate for Per Neur. Does anybody know of a licensed specialist in Minnesota that can advise him? My original guy was a neurologist who later retired and died.

REPLY

Hi @etipton9756 I wanted to join @johnbishop and @jakedduck1 in welcoming you to Connect. You may have noticed I moved your post to this welcome discussion for those living with neuropathy so that you can connect with others with similar experiences. Simply click VIEW AND REPLY in your email notification to get to your post.

I would like to re-emphasize the search tool John suggested from the Foundation for Peripheral Neuropathy's website:
https://www.foundationforpn.org/living-well/neurologist-directory/

How is your personal search going in finding a neurologist?

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