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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.

sunflower1 | @sunflower1 | Sep 19, 2021
In reply to @mothertheresa3 "I am age 53, and I am experiencing more issues that are nerve related. Is there..." + (show)
@mothertheresa3

I am age 53, and I am experiencing more issues that are nerve related.
Is there a disease, disorder, syndrome, etc. that is more specific than just Neuropathy?
FIRST nerve issue was Morton's Neuroma,
SECOND degenerative disk disease, was low back and middle back, now in my neck.
THIRD, ( this is now since post-covid 19) Numbness, tingling, etc... in face, hands, foot, down arm. some stay bothersome all the time, whereas other times comes and goes.
Trying to connect any dots that might are being over looked by the many different specialists.

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Sorry to hear you're going through all this. I'm about the same age. I've been blessed to have been healthy and active until 3 years ago, and I'm chalking it up to menopause - my body does not feel like itself. I think there's got to be some hormonal imbalance or something. I had bilateral adhesive capsulitis in both shoulders within a year of menopause. And now some mysterious nerve damage in foot after breaking my toe last summer....still trying to find a doc who can figure it out.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Sep 19, 2021
In reply to @mothertheresa3 "I am age 53, and I am experiencing more issues that are nerve related. Is there..." + (show)
@mothertheresa3

I am age 53, and I am experiencing more issues that are nerve related.
Is there a disease, disorder, syndrome, etc. that is more specific than just Neuropathy?
FIRST nerve issue was Morton's Neuroma,
SECOND degenerative disk disease, was low back and middle back, now in my neck.
THIRD, ( this is now since post-covid 19) Numbness, tingling, etc... in face, hands, foot, down arm. some stay bothersome all the time, whereas other times comes and goes.
Trying to connect any dots that might are being over looked by the many different specialists.

Jump to this post

@mothertheresa3 -- It's good to learn as much as you can about your health conditions. There is a good overview of neuropathy on the Neuropathy Commons website here that you might find helpful for connecting some of the dots: https://neuropathycommons.org/neuropathy/neuropathy-overview

I also have degenerative disk disease and arthritis and I'm sure that plays a part as the nerves run through the spinal cord and as they can become compressed and cause all sorts of nerve related issues, but that's just my non medical opinion.

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1 reply
mothertheresa3 | @mothertheresa3 | Sep 19, 2021
In reply to @johnbishop "@mothertheresa3 -- It's good to learn as much as you can about your health conditions. There..." + (show)
@johnbishop

@mothertheresa3 -- It's good to learn as much as you can about your health conditions. There is a good overview of neuropathy on the Neuropathy Commons website here that you might find helpful for connecting some of the dots: https://neuropathycommons.org/neuropathy/neuropathy-overview

I also have degenerative disk disease and arthritis and I'm sure that plays a part as the nerves run through the spinal cord and as they can become compressed and cause all sorts of nerve related issues, but that's just my non medical opinion.

Jump to this post

VESTIBULAR NEURITIS:

Wondering now, if I need to add this to my nerve problem list 😕

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 19, 2021
In reply to @mothertheresa3 "VESTIBULAR NEURITIS: Wondering now, if I need to add this to my nerve problem list 😕" + (show)
@mothertheresa3

VESTIBULAR NEURITIS:

Wondering now, if I need to add this to my nerve problem list 😕

Jump to this post

Not sure but there is discussion posted by another member a year ago but she has not posted since -- HELP! New symptoms everyday, Vestibular Neuritis,nerve pain, Ear pain? - https://connect.mayoclinic.org/discussion/help-new-symptoms-everyday-vestibular-neuritisnerve-pain-ear-pain/

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cantab | @cantab | Sep 20, 2021

Has anyone heard of or used the herb Skullcap for PN? Seems it’s a very commonly used treatment for many things. It’s used different ways eg tea, tincture etc. available atAmazon, Chinese herb shops, etc.

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longhauler | @longhauler | Sep 21, 2021

The consensus suggest I have long covid. I say consensus because I test negative for anti bodies. My symptoms are as follows. Horrible skin neuropathy pretty much all over my body but worst spots are front of thighs and chest, Dizzy, low blood pressure, weight loss, taste is off, Fatigue, difficulty focusing, sometimes short of breath. I was diabetic and had high blood pressure but they are gone because I lost 100 lbs. I stopped taking all medications for these conditions. Almost a year now, I have tried everything there is too try I think. Nothing seems to help. I don't think there are doctors who know how to help with this so I try to find things too help me. Very difficult time for me. I believe this was a genetically engineered virus, it has kicked my butt badly.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 21, 2021
In reply to @longhauler "The consensus suggest I have long covid. I say consensus because I test negative for anti..." + (show)
@longhauler

The consensus suggest I have long covid. I say consensus because I test negative for anti bodies. My symptoms are as follows. Horrible skin neuropathy pretty much all over my body but worst spots are front of thighs and chest, Dizzy, low blood pressure, weight loss, taste is off, Fatigue, difficulty focusing, sometimes short of breath. I was diabetic and had high blood pressure but they are gone because I lost 100 lbs. I stopped taking all medications for these conditions. Almost a year now, I have tried everything there is too try I think. Nothing seems to help. I don't think there are doctors who know how to help with this so I try to find things too help me. Very difficult time for me. I believe this was a genetically engineered virus, it has kicked my butt badly.

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Hello @longhauler, Welcome to Connect. I'm not quite sure I would say consensus just because you test negative for antibodies. You list a lot of different symptoms and a dramatic weight loss but you didn't mention what the span of time was. Have you seen a neurologist or been tested for nerve damage?

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revfluegel | @revfluegel | Sep 24, 2021
In reply to @johnbishop "Hello Scott @revfluegel, Welcome to Connect, an online community where patients and caregivers share their experiences,..." + (show)
@johnbishop

Hello Scott @revfluegel, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. @egayle187 @jenniferhunter @suzylulu and other members have discussed similar symptoms of feelings like bugs crawling around under the skin and electric shocks and may be able to share their experience with you.

I also take supplements to help with my idiopathic small fiber peripheral neuropathy. I shared my story in another discussion which you might find helpful - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/

You mentioned you believe your neuropathy may be related to your service deployment in the middle east. The VA has some information that might be helpful if you have not already seen it - Airborne Hazards and Burn Pit Exposures: https://www.publichealth.va.gov/exposures/burnpits/

Do you mind sharing what supplements that you are taking and if you are also taking any medications to help with your neuropathy?

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John, Thank you for responding to my post. The information on the VA sight is minimally helpful, since I have already accomplished registering on the airborne hazards registry. I have been through the VA system since I retired in 2013 and have had no resolution to the diagnosis of idiopathic sensorymotor peripheral neuropathy. I am hoping to find out what caused my neuropathy and then a more focused treatment, not just treating the symptoms. I would like to keep PN from progressing up my legs and arms.

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revfluegel | @revfluegel | Sep 24, 2021
In reply to @johnbishop "Hello Scott @revfluegel, Welcome to Connect, an online community where patients and caregivers share their experiences,..." + (show)
@johnbishop

Hello Scott @revfluegel, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. @egayle187 @jenniferhunter @suzylulu and other members have discussed similar symptoms of feelings like bugs crawling around under the skin and electric shocks and may be able to share their experience with you.

I also take supplements to help with my idiopathic small fiber peripheral neuropathy. I shared my story in another discussion which you might find helpful - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/

You mentioned you believe your neuropathy may be related to your service deployment in the middle east. The VA has some information that might be helpful if you have not already seen it - Airborne Hazards and Burn Pit Exposures: https://www.publichealth.va.gov/exposures/burnpits/

Do you mind sharing what supplements that you are taking and if you are also taking any medications to help with your neuropathy?

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John, I am taking many over the counter supplements; Alpha Lipoic acid, L-carnitine, Turmeric, Omega 3,6,9, Vitamin D, CoQ10, B12. Up to this time I have refused to take Gabapentin or Lyrica, because of there side effects.

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2 replies
kenc | @kenc | Sep 25, 2021
In reply to @revfluegel "John, I am taking many over the counter supplements; Alpha Lipoic acid, L-carnitine, Turmeric, Omega 3,6,9,..." + (show)
@revfluegel

John, I am taking many over the counter supplements; Alpha Lipoic acid, L-carnitine, Turmeric, Omega 3,6,9, Vitamin D, CoQ10, B12. Up to this time I have refused to take Gabapentin or Lyrica, because of there side effects.

Jump to this post

How effective are they?

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