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?

Thank you so much! I will be sharing this information on diagnosing Peripheral Neuropathy with my doctor. Great information!. THANK YOU!

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@jenniferhunter

@sherlock I was looking up CIPD and ran across this link that talks about treatment and studies. Here is the link https://rarediseases.org/rare-diseases/chronic-inflammatory-demyelinating-polyneuropathy/ I wonder if regenerational medicine could help. That's just a guess as I don't know. With autoimmune issues, sometimes detoxing can help by removing something that your body is reacting to, but that would be a question for a functional medicine doctor. The environmental/functional medicine doctor who defined the field was Dr. Rea and here are his volumes written for doctors about what happens chemically within the body in chronic diseases. https://www.ehcd.com/reversibility-of-chronic-degenerative-disease-and-hypersensitivity/ You can also go to Dallas for treatment. This was information that I got from my environmental medicine doctor. I hope your Lyme disease is in remission and not actively attacking your body. I know oxygen levels in the body aid healing and help defeat some of the infections and boosting that may help. If you are not able to exercise to raise your levels, how about something like hyperbaric oxygen chambers, or using an oxygen concentration device? I'm not a doctor, but these would be questions you could ask about.

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Thank you for these web sites. I will check them out. Sound interesting.

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@micha

Hi I'm new in here and am really hoping you might be able to help. Back in September I woke one morning with a weird sensation in back of both legs. After a few days I started to get pain in the soles of my left foot. My doctor said it was planters fasciitis. Then it went to my right foot, then my two feet started to burn, I went to an out of hours doctor who said it was my back that was causing the problem.
To make a long story short the burning progressed to both hands. Ended up back at my doctor who ran a serious of blood tests all came back clear. After a few days I ended up back at out of hours doctor who did a reflex test, he told me I had prepheral neuropathy possibly caused by a vitiamn difiency. Started me on viviaptol multivitamin for a month, it did help left foot and both hands calmed down, back to my own doctor two weeks ago she said that it was pointing towards a vitiamn deficiency. Was put on a complete vitiamn b complex after a week my symptoms got slightly worse. And I also started to get abdominal cramps and other side effects of too much b6. The supplement I was on had 50mg of b6 in it. Can I add that my diet before I started the viviptol was very poor. But have been eating extremely healthy since. The weird part of this is that I only suffer when I'm in work once I'm at home I have very little trouble with burning actually none.
What has me stumped is how can a vitiamn deficiency only effect you at work? And could the vitiamn b complex have made it worse as I now eat healthy. I'm starting to think that maybe it is all coming from my back. Can anyone help.

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Hi @micha, welcome to Mayo Clinic Connect. I'm happy you figured out how to start a new discussion. I just saw your first post and was going to recommend that you do a search of discussions on Connect before starting a new one. Sometimes you will find one that has symptoms similar to yours with more members. When you do find one that fits and post your question, you will have more members that will see your post and be able to share their story and what works for them. It's easy to do a search on Connect. You just have to click on the small magnifying glass at the top of any Connect screen and type your search word or phrase. I'm glad you are asking questions and learning as much as you can about your health conditions. We all need to be our own advocate when it comes to our health. Learning as much as we can and asking questions will help us communicate better with our doctors and hopefully come up with a better treatment plan.

I have no medical background or training but I have learned a lot about neuropathy since being diagnosed with idiopathic small fiber peripheral neuropathy. Simply put neuropathy is caused by nerve damage of some sort, including pinched or compressed nerves. So to answer your question, the symptoms you are describing could be coming from your back but only a medical professional or specialist can provide the diagnosis and possible treatment that will help you. I'm happy to see that you have taken a really important first step for your health — eating extremely healthy.

I'm tagging our moderator @JustinMcClanahan to see if we should move your post to the following discussion for more visibility where you can meet many other members who share some of your symptoms.

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

I'm also tagging other members who have discussed back pain in previous posts to see if they are able to offer any recommendations for you. @grandmar, @jenniferhunter, @lioness, @artscaping, @steeldove do you have any recommendations for @micha?

John

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Hi I'm new in here and am really hoping you might be able to help. Back in September I woke one morning with a weird sensation in back of both legs. After a few days I started to get pain in the soles of my left foot. My doctor said it was planters fasciitis. Then it went to my right foot, then my two feet started to burn, I went to an out of hours doctor who said it was my back that was causing the problem.
To make a long story short the burning progressed to both hands. Ended up back at my doctor who ran a serious of blood tests all came back clear. After a few days I ended up back at out of hours doctor who did a reflex test, he told me I had prepheral neuropathy possibly caused by a vitiamn difiency. Started me on viviaptol multivitamin for a month, it did help left foot and both hands calmed down, back to my own doctor two weeks ago she said that it was pointing towards a vitiamn deficiency. Was put on a complete vitiamn b complex after a week my symptoms got slightly worse. And I also started to get abdominal cramps and other side effects of too much b6. The supplement I was on had 50mg of b6 in it. Can I add that my diet before I started the viviptol was very poor. But have been eating extremely healthy since. The weird part of this is that I only suffer when I'm in work once I'm at home I have very little trouble with burning actually none.
What has me stumped is how can a vitiamn deficiency only effect you at work? And could the vitiamn b complex have made it worse as I now eat healthy. I'm starting to think that maybe it is all coming from my back. Can anyone help.

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@micha

Hi I'm new in here and am really hoping you might be able to help. Back in September I woke one morning with a weird sensation in back of both legs. After a few days I started to get pain in the soles of my left foot. My doctor said it was planters fasciitis. Then it went to my right foot, then my two feet started to burn, I went to an out of hours doctor who said it was my back that was causing the problem.
To make a long story short the burning progressed to both hands. Ended up back at my doctor who ran a serious of blood tests all came back clear. After a few days I ended up back at out of hours doctor who did a reflex test, he told me I had prepheral neuropathy possibly caused by a vitiamn difiency. Started me on viviaptol multivitamin for a month, it did help left foot and both hands calmed down, back to my own doctor two weeks ago she said that it was pointing towards a vitiamn deficiency. Was put on a complete vitiamn b complex after a week my symptoms got slightly worse. And I also started to get abdominal cramps and other side effects of too much b6. The supplement I was on had 50mg of b6 in it. Can I add that my diet before I started the viviptol was very poor. But have been eating extremely healthy since. The weird part of this is that I only suffer when I'm in work once I'm at home I have very little trouble with burning actually none.
What has me stumped is how can a vitiamn deficiency only effect you at work? And could the vitiamn b complex have made it worse as I now eat healthy. I'm starting to think that maybe it is all coming from my back. Can anyone help.

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Hello @micha. As @johnbishop recommended, I did move your discussion to the welcome group so that more members would see your post. There is also another very active discussion titled, "anyone here dealing with peripheral neuropathy?" that you may want to check out, https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/.

However, if you would like to start a new discussion on peripheral neuropathy, I recommend making it a specific discussion focused a specific issue as that can be really helpful for the group overall. For example, Peripheral Neuropathy: Do diet or vitamins help? or Peripheral Neuropathy: Suffering at different times of the day. Or any other particular topic of interest. Here is how to do that:

– Click on the group that you would like to start a new discussion in (i.e. Neuropathy)
– From the Group’s homepage, click on the grey box that reads START A DISCUSSION.
– Type a brief title, but be descriptive (as mentioned above)
– Type your message. This is where you can type in more detail about what you are experiencing or have questions about.
– In the bottom right corner from where you just typed your message, click the grey CREATE DISCUSSION box.

@micha, do you have any future tests or appointments on the calendar to address your concerns with your back?

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Hi. I have Chemo induced neuropathy. Ive had it 10years and it never gets better. I just dont know what to do.

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@sandi50

Hi. I have Chemo induced neuropathy. Ive had it 10years and it never gets better. I just dont know what to do.

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Hi @sandi50, welcome to Mayo Clinic Connect. I have idiopathic small fiber peripheral neuropathy and have had it for 20+ years.

Are you able to share a little more about the symptoms you have from the chemo induced neuropathy or what you have tried so far for treatments?

I'm tagging other members who have discussed chemo induced neuropathy in a post to see if they have any suggestions. @deeinpa, @elizm, @caf132, and @martid do you have any recommendations or information you can share with @sandi50 ?

@sandi50 I only have numbness with my neuropathy and do not suffer with any pain. I take over the counter supplements I found in a closed Facebook group that also has a website – http://solutions2pnpd.com/. It's not a cure but it helps with pain and helps me somewhat with my numbness or at least it seems to have stopped the progression of my neuropathy which the neurologist told me would happen. The important thing I've learned here on Connect is to learn as much as you can about your specific health condition and do as much research on it as you can. The more you know, the better questions you can ask your doctors and hopefully help them come up with a trreatment plan. You can read my story and how I found what works for me in an earlier post on Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

John

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@johnbishop

Hi @sandi50, welcome to Mayo Clinic Connect. I have idiopathic small fiber peripheral neuropathy and have had it for 20+ years.

Are you able to share a little more about the symptoms you have from the chemo induced neuropathy or what you have tried so far for treatments?

I'm tagging other members who have discussed chemo induced neuropathy in a post to see if they have any suggestions. @deeinpa, @elizm, @caf132, and @martid do you have any recommendations or information you can share with @sandi50 ?

@sandi50 I only have numbness with my neuropathy and do not suffer with any pain. I take over the counter supplements I found in a closed Facebook group that also has a website – http://solutions2pnpd.com/. It's not a cure but it helps with pain and helps me somewhat with my numbness or at least it seems to have stopped the progression of my neuropathy which the neurologist told me would happen. The important thing I've learned here on Connect is to learn as much as you can about your specific health condition and do as much research on it as you can. The more you know, the better questions you can ask your doctors and hopefully help them come up with a trreatment plan. You can read my story and how I found what works for me in an earlier post on Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

John

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Neuropathy in any form is worrysome. I am having Ulnar neuropathy and for the past one year I suffered a lot. Whatever it is till U get a good medicine your problem wont"t be solved. Patience is very important. I searched many doctors till I got a good one. Problem vary from one to another. We can't go in detail inwards. I have been taking blood thinners, tablets for health such as Coqueen 100 etc. has given me some strength. Moreover I am warding compression stockings which has managed to give some blood supply to me legs. Swelling & numbness have come down. Now i am able to do my routine work. But the problem is the tiredness during night times. Moreover i am afraid that if I skip my health tablets my legs will get that much health. Whatever it is, patience is important, testing many medicines etc. can be boring but ask for a good medicine.

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I received a private message from @lavieauxusa1972 with a question that I thought others may also be able to help answer so I thought I would answer the question here so that other members may also be able to share any information they may have. Thank you for sending me the private message. Most of us start on Connect because we are searching for information of some sort. We as patients need to be our own advocate for our health. Research, asking questions, sharing with others, all help you gain more knowledge. The knowledge helps you better communicate with your doctor.

I have small fiber PN mostly in my feet, ankles and lower legs. I also have a little in my hands and finger tips. My symptoms with my neuropathy are numbness and tingling only. I do not have any associated pain. From what I understand, roughly 20% of people with PN only have the numbness while everyone else has pain and numbness. There is no cure for PN but there are treatments that members use to help with the symptoms. You can read my story and what has helped me here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Question: Do you know if Mayo uses Botox A (Botulinum toxin A (BoNT-A))? — Referring to treating severe pain associated with small fiber PN in the upper arms. Also, the person was asking if glucose intolerance can be a factor.

Here is some information I found that may help but it doesn't answer the question if a Mayo neurologist or doctor would prescribe it as a treatment. I think that has to be something discussed with the doctor. The first link lists some doctors in neurology with experise in Botox injections and if you are a Mayo patient it would be good to discuss possible with your doctor.

Mayo Clinic – Request an Appointment – Patient Care & Health Information – Tests & Procedures – Botox injections
https://www.mayoclinic.org/tests-procedures/botox/doctors-departments/pdc-20384659

NIH – Botulinum Toxin for the Treatment of Neuropathic Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5618193/

NIH – Neuropathy of Impaired Glucose Tolerance and Its Measurement
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797976/

@lavieauxusa1972 do you have other questions you are trying to get answered? Have you discussed Botulinum toxin A (BoNT-A) as possible treatment with your Mayo neurologist?

John

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Good morning all……My name is Barbie from minot and im the mother of a 27 yr old daughter that was recently diagnosed with polyneuropathy. We've seen 12 drs here in minot….they say there is nothing more they can do for her except go to mayo. The worse is the numbness in her hands. Any advice? She thinks if could possibly be from drinking?

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@6969

Good morning all……My name is Barbie from minot and im the mother of a 27 yr old daughter that was recently diagnosed with polyneuropathy. We've seen 12 drs here in minot….they say there is nothing more they can do for her except go to mayo. The worse is the numbness in her hands. Any advice? She thinks if could possibly be from drinking?

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Hello Barbie @6969, welcome to Mayo Clinic Connect. Thank you for being an advocate for your daughter. It's good to learn as much as you can about a diagnosis or health condition. Connect is a great place to ask questions and learn what others with similar health conditions or symptoms are doing for treatments. Here is some information on polyneuropathy:

Medical News Today (April 2017) – What to know about polyneuropathy
https://www.medicalnewstoday.com/articles/317212.php

Mayo Clinic – Symptoms – Numbness in Hands
https://www.mayoclinic.org/symptoms/numbness-in-hands/basics/when-to-see-doctor/sym-20050842

Did your daughter's doctors provide a referral to Mayo Clinic? If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

Has your daughter found anything that helps with the numbness in her hands?

John

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@johnbishop

Hello Barbie @6969, welcome to Mayo Clinic Connect. Thank you for being an advocate for your daughter. It's good to learn as much as you can about a diagnosis or health condition. Connect is a great place to ask questions and learn what others with similar health conditions or symptoms are doing for treatments. Here is some information on polyneuropathy:

Medical News Today (April 2017) – What to know about polyneuropathy
https://www.medicalnewstoday.com/articles/317212.php

Mayo Clinic – Symptoms – Numbness in Hands
https://www.mayoclinic.org/symptoms/numbness-in-hands/basics/when-to-see-doctor/sym-20050842

Did your daughter's doctors provide a referral to Mayo Clinic? If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

Has your daughter found anything that helps with the numbness in her hands?

John

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no she hasn't…..and thank you…..her skin is itchy….she scratches till she bleeds because she can't feel anything. Do you know any causes someone just unexpectedly gets polyneuropathy? It started with her lips going numb.

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@6969 Barbie, if your daughter suspects that alcohol might be a cause of polyneuropathy, she might be interested in this article https://www.alcohol.org/comorbid/polyneuropathy/

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@steeldove

@6969 Barbie, if your daughter suspects that alcohol might be a cause of polyneuropathy, she might be interested in this article https://www.alcohol.org/comorbid/polyneuropathy/

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thank you

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What are the differences between the different 'types' of neuropathy? Peggy

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