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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Thx Hank, have tried copy and pasting from this site and it won't work. I don't get it. Makes no sense. Mmmmmmm This one is when I hold my finger in the field, emoji options appear but they aren't too good. They look super tiny and almost unreadable when I past them here. I don't know how big they come out when you see them. I'll try putting my name here in this message so I can see what you receive. 😏 Take care and have a good day, Sunny @sunnyflower

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@sunnyflower

Thx Hank, have tried copy and pasting from this site and it won't work. I don't get it. Makes no sense. Mmmmmmm This one is when I hold my finger in the field, emoji options appear but they aren't too good. They look super tiny and almost unreadable when I past them here. I don't know how big they come out when you see them. I'll try putting my name here in this message so I can see what you receive. 😏 Take care and have a good day, Sunny @sunnyflower

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Hi Sunny, I sent you a private message about this. Hank

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Hi everyone, it's been a while. Has anybody had recent experience with sacral neuromodulation ( InterStim device)?

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@elizabej

Hi everyone, it's been a while. Has anybody had recent experience with sacral neuromodulation ( InterStim device)?

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@elizabej, There is a discussion started by @januaryjane on Sacral Nerve Stimulation but it doesn't have many posts. She may be able to offer more information or experience - https://connect.mayoclinic.org/discussion/sacral-nerve-stimulation/

Here's some information that may provide some answers for you:
- Sacral nerve stimulator: https://www.mayoclinic.org/sacral-nerve-stimulation/img-20008680
- Patient Story - Back in Control After Successful Incontinence Treatment: https://sharing.mayoclinic.org/2020/01/06/back-in-control-after-successful-incontinence-treatment/

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@jesfactsmon

@avmcbellar Great Toni, just be careful not to use too much in a single cup, it is strong. Hank

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@jesfactsmon Hi Hank and Linda. It has been a month since my last headache. This time I was better prepared with the Shifa tea. I followed your instructions except I froze the concentrated tea in ice cube trays. I put one or two cubes in a small amount of water to sip. The headache decreased in intensity. The tea helped but unfortunately it didn’t make the headache disappear. I believe the headache is caused by the eyesight. Doing the eye exercises is causing changes with my eyesight and balance. I can feel it in my ears as well. I will try sipping the tea throughout the month to see if it makes a difference. I want to thank you both for the recommendation. It was definitely worth trying. I hope the motion sickness eventually gets better. Thanks again. Wish you both well. Toni🤓

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@avmcbellar

@jesfactsmon Hi Hank and Linda. It has been a month since my last headache. This time I was better prepared with the Shifa tea. I followed your instructions except I froze the concentrated tea in ice cube trays. I put one or two cubes in a small amount of water to sip. The headache decreased in intensity. The tea helped but unfortunately it didn’t make the headache disappear. I believe the headache is caused by the eyesight. Doing the eye exercises is causing changes with my eyesight and balance. I can feel it in my ears as well. I will try sipping the tea throughout the month to see if it makes a difference. I want to thank you both for the recommendation. It was definitely worth trying. I hope the motion sickness eventually gets better. Thanks again. Wish you both well. Toni🤓

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@avmcbellar
Hi Toni, nice to see a post from you!
Yes, Linda would agree with you that the tea does not eliminate her headaches. But it pretty consistently lessens the headache pain by about 1/3. It's enough to keep it from being horrible, which hers can sometimes be. I can definitely understand why your headaches can originate from your eyes. I hope your exercises eventually help you to eliminate your double vision. I admire you for working so assiduously to do these exercises. I have been reading the book about neuroplasticity. Tremendously interesting subject! Best, Hank

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@chrs6
Hi, I see that you posted back on 9/13 that you suffer from neuropathy. Can you describe where you feel it the most? How long have you had it? I would like to know more about you and your situation chrs6. Please fill us in. Best, Hank

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Hi I think that behind my toes in my feet, there is no feeling? I was told by my PCP that as one adds years to ones life this happens to some folks, my feet are a long ways from my heart, so as individuals age sensations in the feet and toes can be affected, has any one else had this happen????

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@elderellen

Hi I think that behind my toes in my feet, there is no feeling? I was told by my PCP that as one adds years to ones life this happens to some folks, my feet are a long ways from my heart, so as individuals age sensations in the feet and toes can be affected, has any one else had this happen????

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@elderellen
Hi there. So you are experiencing numbness in your feet and toes? There is an excellent discussion ongoing in the neuropathy group regarding numbness and peripheral neuropathy (PN). Here is the link, you might find some of the posts very interesting:
https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
John Bishop @johnbishop started that discussion. He is suffering from numbness in both feet. You can read his story there and what he has been doing to help his situation. You will also find others who have chimed in about their numbness as well. Give it a look. And by the way, welcome. This forum is a great place to gain first hand info from others and get support from other sufferers like yourself. Hope you gain the insights you are seeking.

Best to you, Hank

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