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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.

sunnyflower | @sunnyflower | Sep 13, 2020
In reply to @johnbishop "@sunnyflower, When you look at the emails in your Connect folder that your husband set up..." + (show)
@johnbishop

@sunnyflower, When you look at the emails in your Connect folder that your husband set up for you, the subject of the email contains the name of the discussion. It will also tell you if someone mentioned you in the discussion or if someone liked a post you made.

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Yes, thank you. I thought it only tells someone if they were mentioned a discussion if their Mayo name @..... was somewhere in the email/reply/discussion. Take care, Sunnyflower

REPLY
sunnyflower | @sunnyflower | Sep 13, 2020
In reply to @david33 "HankB @jesfactsmon Hello Hank, In 2012, was the trailer fire. I lost 7 dogs and 6..." + (show)
@david33

HankB @jesfactsmon
Hello Hank,
In 2012, was the trailer fire. I lost 7 dogs and 6 cats in there. I can honestly say now that my mind is stuck on the fact that it was arsoned and the reason I believe this is because I lived in this trailer for 2 years and when my family would leave we would turn the main breaker off. April 19th 2012 I finally got my bill of sell and made plans to move the trailer into a country area, on April 21st 2012 we left to go and get some flowers and we decided to give our neighbor one of our babies for a surprise, (friend of ours at the time) without him knowing. When we we heading home he called my husband and asked 3 times if we had our daughter which he answered "yes".
When I was told about the fire, I kept screaming "breck in back door, bust in the glass" but he said it too late. A 13 year old female seen it all and told me she tried to save them while others just watched. When I told the person who was supposed to get a pup and he told me "if I had known that, the fire would never have happened."
My mind shut down after that, I had to go through therapy and put on meds to help me to cope of the loss of my fur babies.

Before the accident of getting hit in the head with a log, I also hit my own head with the claw part of a hammer which the doctors claim I did it on purpose. My husband told the doctor he could understand if I hit my head with the hammer twice but 6 times without me knowing I was really doing it?
This is why I'm scared of having brain fog, or clouds, I can't think or communicate when this happens and my husband makes sure that I'm in a safe place and keeps a close I on me so that I don't do harm to myself or others when this happens.

I was told I have chronic issues to where I make myself have medical problems and that I'm looking for attention.

Thank you for the idea about writing a journal on this, and I will start right away, maybe I can pin point where the fog, or cloud started and get to the bottom of what is going on.
SORRY for writing a story.

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Dearest Laura @david33, Gasp, I can't even wrap my mind around what you've been through!!!!!!!!!! My heart is aching for you and your family!!! I will keep you in my prayers and pray that the Lord comforts you and gives you the peace of God through Christ which surpasses all human understanding. That's the only thing that keeps me sane and going on. Warmest regards, Sunnyflower

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 13, 2020
In reply to @sunnyflower "Thx but we looked and there are some that do not contain the word, "neuropathy" anywhere..." + (show)
@sunnyflower

Thx but we looked and there are some that do not contain the word, "neuropathy" anywhere in the email. . Working on it; have n'fied Colleen.

Jump to this post

@sunnyflower, you're right. When someone "likes" your post, you cannot tell which group or discussion the post is in until you open the email. Ummm. That should be something we look at changing. Thanks for the tip.

Replies give you plenty of information. See image attached.
In the subject line of the email you can see both who posted the message and the title of the discussion (i.e., topic).
At the bottom of the email you can see the group (or groups) that the discussion is in.

Should you have more tech or navigation questions, feel free to contact me directly using this form: https://connect.mayoclinic.org/contact-a-community-moderator/
REPLY
1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 13, 2020
In reply to @sunnyflower "Dearest Laura @david33, Gasp, I can't even wrap my mind around what you've been through!!!!!!!!!! My..." + (show)
@sunnyflower

Dearest Laura @david33, Gasp, I can't even wrap my mind around what you've been through!!!!!!!!!! My heart is aching for you and your family!!! I will keep you in my prayers and pray that the Lord comforts you and gives you the peace of God through Christ which surpasses all human understanding. That's the only thing that keeps me sane and going on. Warmest regards, Sunnyflower

Jump to this post

@david33 Laura. I feel so much sadness for you. My fur baby is everything. You are very strong to deal with this

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1 reply
avmcbellar | @avmcbellar | Sep 13, 2020
In reply to @sunnyflower "Thx but we looked and there are some that do not contain the word, "neuropathy" anywhere..." + (show)
@sunnyflower

Thx but we looked and there are some that do not contain the word, "neuropathy" anywhere in the email. . Working on it; have n'fied Colleen.

Jump to this post

@sunnyflower, if there is no mention of a group or topic it may be an email notification of a member “liking” your post. Look at all your emails and you will see. Toni

REPLY
avmcbellar | @avmcbellar | Sep 13, 2020
In reply to @sunnyflower "Yes, most do but some definitely do not. Anywhere! Believe me, we looked. Could be it..." + (show)
@sunnyflower

Yes, most do but some definitely do not. Anywhere! Believe me, we looked. Could be it was some replies, but underneath in blue that is usually there, isn't in some. Thx for taking the time. 😊

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@sunnyflower those emails without mention of a group below the blue are emails notifying you that a member “liked” your posting. No reply is needed. You will get used to seeing that. Toni

REPLY
sunnyflower | @sunnyflower | Sep 13, 2020
In reply to @colleenyoung "@sunnyflower, you're right. When someone "likes" your post, you cannot tell which group or discussion the..." + (show)
@colleenyoung

@sunnyflower, you're right. When someone "likes" your post, you cannot tell which group or discussion the post is in until you open the email. Ummm. That should be something we look at changing. Thanks for the tip.

Replies give you plenty of information. See image attached.
In the subject line of the email you can see both who posted the message and the title of the discussion (i.e., topic).
At the bottom of the email you can see the group (or groups) that the discussion is in.

Should you have more tech or navigation questions, feel free to contact me directly using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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Ok. But yes, I keep saying I know about this in blue beneath the text however, it was NOT there in the reply. More to you at the link you sent. Thx

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Mentor
Jim, Volunteer Mentor | @jimhd | Sep 14, 2020
In reply to @steeldove "For all of those with severe neuropathy pain in the feet and ankles, I urge you..." + (show)
@steeldove

For all of those with severe neuropathy pain in the feet and ankles, I urge you to talk with your doc/pain management about the possibility of getting a peripheral nerve stimulator. Take a look at SPR Peripheral Nerve Stimulator (SPRINT) and Bioness StimRouter. SPR is A 60-day treatment; StimRouter is a permanent implant.

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@steeldove

I had a Burst DR spinal cord stimulator implant in June of 2017, and enjoyed a year of 75-80% pain reduction. After the first year, well that's more than I have time or energy to write about. I wrote about it in the discussion "Member Neuropathy Journeys".

Jim

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1 reply
Laura48(Laura Walters) | @david33 | Sep 14, 2020
In reply to @bustrbrwn22 "@david33 Laura. I feel so much sadness for you. My fur baby is everything. You are..." + (show)
@bustrbrwn22

@david33 Laura. I feel so much sadness for you. My fur baby is everything. You are very strong to deal with this

Jump to this post

Thank you

REPLY
Hank | @jesfactsmon | Sep 14, 2020
In reply to @david33 "HankB @jesfactsmon Hello Hank, In 2012, was the trailer fire. I lost 7 dogs and 6..." + (show)
@david33

HankB @jesfactsmon
Hello Hank,
In 2012, was the trailer fire. I lost 7 dogs and 6 cats in there. I can honestly say now that my mind is stuck on the fact that it was arsoned and the reason I believe this is because I lived in this trailer for 2 years and when my family would leave we would turn the main breaker off. April 19th 2012 I finally got my bill of sell and made plans to move the trailer into a country area, on April 21st 2012 we left to go and get some flowers and we decided to give our neighbor one of our babies for a surprise, (friend of ours at the time) without him knowing. When we we heading home he called my husband and asked 3 times if we had our daughter which he answered "yes".
When I was told about the fire, I kept screaming "breck in back door, bust in the glass" but he said it too late. A 13 year old female seen it all and told me she tried to save them while others just watched. When I told the person who was supposed to get a pup and he told me "if I had known that, the fire would never have happened."
My mind shut down after that, I had to go through therapy and put on meds to help me to cope of the loss of my fur babies.

Before the accident of getting hit in the head with a log, I also hit my own head with the claw part of a hammer which the doctors claim I did it on purpose. My husband told the doctor he could understand if I hit my head with the hammer twice but 6 times without me knowing I was really doing it?
This is why I'm scared of having brain fog, or clouds, I can't think or communicate when this happens and my husband makes sure that I'm in a safe place and keeps a close I on me so that I don't do harm to myself or others when this happens.

I was told I have chronic issues to where I make myself have medical problems and that I'm looking for attention.

Thank you for the idea about writing a journal on this, and I will start right away, maybe I can pin point where the fog, or cloud started and get to the bottom of what is going on.
SORRY for writing a story.

Jump to this post

@david33 Laura, you and your husband have clearly had more than a normal person's share of heartache and grief. I am so sorry to know all of this, believe me.

I would organize the medical history in a very orderly way:

1. Make it chronological, start with your first medical issues & doctor visits to the next, next, next and finally the most recent
2. For each medical issue list just the symptoms you had at that time, not ones that came earlier or later
3. For each doctor visit include doc name and speciality, symptoms he/she treated you for, medications that were prescribed
4. after starting the prescriptions, describe the results of taking them and how long you were on them

Put in important details, leave out anything that is not relevant, as well as personal issues and feelings. You want it to be concise and clear for others to be able to glean info from.

You probably want to do this on a computer so you can edit, I am sure there will be lots of edits needed as you go along. The result of completing this is it will serve as a reference for you as well as any docs going forward about your history. As you are writing it, or afterward, you might begin to notice patterns and things you didn't notice before; your journals may turn out to be very valuable to you because of doing this.

I know losing your home and all of your beloved pets in the fire had to be an extreme trauma for you. Do you have someone to talk to about all of this? Have you seen any therapists? It sounds like you do need some mental health therapy, but that is not always easy to find or get. I would recommend using this forum, Mayo Connect, a lot. But when you post, you will get the most helpful advice if you can think before you write about precisely what you would like to have input about. Try to help others to understand your main dilemma and problem so that they can give you better advice. This is a tool for getting ideas for yourself.

I hope maybe this might be helpful to you Laura. My heart goes out to both you and David. Hank

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