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.
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
@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/
@david33 Laura. I feel so much sadness for you. My fur baby is everything. You are very strong to deal with this
@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
@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
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
@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
Thank you
@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
Anyone. How do I get to “members journeys”?