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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.

Mentor
John, Volunteer Mentor | @johnbishop | Nov 16, 2021
In reply to @kp6350 "I am at a loss as to what to do. My PCP assured me my B..." + (show)
@kp6350

I am at a loss as to what to do. My PCP assured me my B vitamin levels were good. No need for supplements. An acupuncturist that I have been seeing ( BTW not helping) assured me that any extra b vitamins my body would secrete. Who and what do you believe. I just want help with this and no one and nothing helps. One person contradicts the other.

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B6 is the only B vitamin that is a little different in the way the body handles it according to what I've read. Here's a better explanation.

B6 section it explains -- too much or too little gives neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 16, 2021
In reply to @jabax "Any treatments for gum neuropathy, had for year." + (show)
@jabax

Any treatments for gum neuropathy, had for year.

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Hello @jabax, Welcome to Connect. It must be frustrating to have neuropathy in your gums for a year and not found any treatments that help. Have you been diagnosed with Trigeminal Neuralgia or something else?

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2 replies
jabax | @jabax | Nov 17, 2021
In reply to @johnbishop "Hello @jabax, Welcome to Connect. It must be frustrating to have neuropathy in your gums for..." + (show)
@johnbishop

Hello @jabax, Welcome to Connect. It must be frustrating to have neuropathy in your gums for a year and not found any treatments that help. Have you been diagnosed with Trigeminal Neuralgia or something else?

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Thanks for info, John Bishop.
Fortunately no sharp pains, only loss of feeling now on my right upper and lower gums. Also have mild neuropathy in fingers and toes. Did not affect me until had 2
dental crowns done.
Now must see neurologist. JABax

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d13 | @d13 | Nov 17, 2021
In reply to @rickhood "I have peripheral neuropathy in my feet that came on all of a sudden in May..." + (show)
@rickhood

I have peripheral neuropathy in my feet that came on all of a sudden in May 2019. It is gradually getting worse. Symptoms are numbness -- not really any pain or tinging just straight numbness. I feel it mainly when standing not sitting. It is worst first thing in the morning when standing when getting out of bed.

My frustration is not being able to find a cause.

Possible causes:

1) Low B12 - while I have low B12, I take shots and B12 is fine with the shots.
2) Blood sugar - fasting glucose is usually around 104, which is a bit high, but A1C is within range.
3) Alcohol - I do not drink at all since 1995
4) Circulation - my doctor says it is fine.
5) Lower back - I do have some issues in my lower back, but people examining MRIs cannot see a major problem.

None of the above is a "smoking gun".

I don't know what else to do to try to find a cause.

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My neuropathy in my feet came about with having chemotherapy for breast cancer. I only had two treatments, but caused alot of nerve damage. I also only have the numbness, mostly in my left foot, because of having a little nerve damage mostly on the top of my big toe area due to a sciatic nerve problem many years ago. My daughter gave me some roll on salve to try. It is helping with the hot sensations I get mostly at night. And with the numbness. It's called Dragon deep tissue salve. It contains camphor oil plus menthol, 300mg THC + 300MG CBD + 20mg CBN It is a roll up stick; 3.4oz. It is legal in Washington state, so it must be also legal in other states as well. It sells under the name of Nano emulsified cannabinoids. Roll - up dragon balm. It helps me, so it could help others with the numbness as well.

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1 reply
ubelinda | @ubelinda | Nov 18, 2021
In reply to @d13 "My neuropathy in my feet came about with having chemotherapy for breast cancer. I only had..." + (show)
@d13

My neuropathy in my feet came about with having chemotherapy for breast cancer. I only had two treatments, but caused alot of nerve damage. I also only have the numbness, mostly in my left foot, because of having a little nerve damage mostly on the top of my big toe area due to a sciatic nerve problem many years ago. My daughter gave me some roll on salve to try. It is helping with the hot sensations I get mostly at night. And with the numbness. It's called Dragon deep tissue salve. It contains camphor oil plus menthol, 300mg THC + 300MG CBD + 20mg CBN It is a roll up stick; 3.4oz. It is legal in Washington state, so it must be also legal in other states as well. It sells under the name of Nano emulsified cannabinoids. Roll - up dragon balm. It helps me, so it could help others with the numbness as well.

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I have peripheral neuropathy and pain in legs and numbness in fingers, and would like to know try this roll on. Is this prescribed or could I just purchase and where? Thank you and blessings. Ubelinda

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1 reply
speercntry | @speercntry | Nov 18, 2021

I’ve got TN in my gums/mouth it makes it very difficult to eat or drink anything. I’m on 600mg gabapentin 3 times a day for five days now and not much relief. I can’t even make it to eight hours I have to take it every six. Can I take more than 1800mg a day.

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Jeep | @jeep | Nov 18, 2021

Hi, I'm just now entering this world of foot neuropathy and I am hoping to hear from others on how they deal with this blessing. Thanks for any advice / assurances! Jeep

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 18, 2021
In reply to @jeep "Hi, I'm just now entering this world of foot neuropathy and I am hoping to hear..." + (show)
@jeep

Hi, I'm just now entering this world of foot neuropathy and I am hoping to hear from others on how they deal with this blessing. Thanks for any advice / assurances! Jeep

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Hello @jeep, I see that it has been awhile since you have posted on Connect. I'm sorry to hear you are now entering the world of neuropathy in your feet. You mentioned having a Pineal Cyst in your earlier post. I found an interesting article supporting the description in your earlier post - "I say that the area in our heads is prime real estate and anything extra in there can cause symptoms.".

Pineal Cysts: Worth a Second Look:
-- https://muschealth.org/health-professionals/progressnotes/2018/spring/features/pineal-cysts

Have you now been diagnosed with neuropathy or do your doctors think the new symptoms are related to your Pineal Cyst?

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1 reply
levisdad | @levisdad | Nov 18, 2021
In reply to @johnbishop "Hello @jeep, I see that it has been awhile since you have posted on Connect. I'm..." + (show)
@johnbishop

Hello @jeep, I see that it has been awhile since you have posted on Connect. I'm sorry to hear you are now entering the world of neuropathy in your feet. You mentioned having a Pineal Cyst in your earlier post. I found an interesting article supporting the description in your earlier post - "I say that the area in our heads is prime real estate and anything extra in there can cause symptoms.".

Pineal Cysts: Worth a Second Look:
-- https://muschealth.org/health-professionals/progressnotes/2018/spring/features/pineal-cysts

Have you now been diagnosed with neuropathy or do your doctors think the new symptoms are related to your Pineal Cyst?

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diagnostical results from testing

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1 reply
d13 | @d13 | Nov 18, 2021
In reply to @ubelinda "I have peripheral neuropathy and pain in legs and numbness in fingers, and would like to..." + (show)
@ubelinda

I have peripheral neuropathy and pain in legs and numbness in fingers, and would like to know try this roll on. Is this prescribed or could I just purchase and where? Thank you and blessings. Ubelinda

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I will need to ask my daughter where she purchased. I don't know about putting it on the hands. It is suggested not to rub the eyes after applying. Even when I roll it on my feet, I massage it in by just using both feet; one over and under the other one. So I never get it on my hands. I will get back with an answer about where you can purchase asap.

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