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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.

pusher | @pusher | Feb 25, 2022
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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John, I'm new and looking for a topic list, help.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 25, 2022
In reply to @pusher "John, I'm new and looking for a topic list, help." + (show)
@pusher

John, I'm new and looking for a topic list, help.

Jump to this post

@pusher, By looking for a topic list do you mean a list of the different health groups and the list of discussions under each group? Here's a list of the discussions in the Neuropathy group if that's what you want - https://connect.mayoclinic.org/group/neuropathy/. If you are looking for a different group, just scroll all the way to the top and click the Groups link in the top link that says Groups / Neuropathy / Living with Neuropathy - Welcome to the group

Is that what you are looking for?

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2 replies
pusher | @pusher | Feb 25, 2022
In reply to @johnbishop "@pusher, By looking for a topic list do you mean a list of the different health..." + (show)
@johnbishop

@pusher, By looking for a topic list do you mean a list of the different health groups and the list of discussions under each group? Here's a list of the discussions in the Neuropathy group if that's what you want - https://connect.mayoclinic.org/group/neuropathy/. If you are looking for a different group, just scroll all the way to the top and click the Groups link in the top link that says Groups / Neuropathy / Living with Neuropathy - Welcome to the group

Is that what you are looking for?

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Yes, got it now, thanks.

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fields123 | @fields123 | Feb 25, 2022
In reply to @johnbishop "@pusher, By looking for a topic list do you mean a list of the different health..." + (show)
@johnbishop

@pusher, By looking for a topic list do you mean a list of the different health groups and the list of discussions under each group? Here's a list of the discussions in the Neuropathy group if that's what you want - https://connect.mayoclinic.org/group/neuropathy/. If you are looking for a different group, just scroll all the way to the top and click the Groups link in the top link that says Groups / Neuropathy / Living with Neuropathy - Welcome to the group

Is that what you are looking for?

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Hi my name is Rachel/This is my second message.Sorry need to wait till my son can take my picture.I have had neuropathy about ten years after having fusion and laminectomy on my back.I am 93 years old and a year ago the Orthopedic dr was increased the dosage of Gabapentin after a bulging disc was removed from my lower back.The surgery was successful but a few months later my leg, back and sciatic pain increased .The Orthopedic dr suggested I increase my med to 1600 dose.I had lots of side effects from the Gabapentin .I decided to see a Neurologist after reading some of the commends .I am glad I did see him.He suggested I get blood work to check on my level of Gabapetin and B12 levels in my blood .I am reducing the Gabapentin to 900mg.The dr obtain all my health records and feels my pains are due to Neuropathy but also sciatic nerve. I started taking CBD in liquid form at bed time and divided my Gabapentin with 600 dose at bed time.Not sure the CBD helps .I am sleeping better and reducing gradually the Gabapentin seems to improve my balance and feel less tired during the day.Bought the Bombas slippers but not safe walking on my hard wood floor.Sitting or standing is most painful resting on my sofa is best .I have symptoms during the day and at night in bed. I have adjusted to the symptoms as well as posible but it is not easy.Always glad to hear how others handle the neuropathy pain.Thanks for the group.

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gabyroger | @gabyroger | Feb 25, 2022
In reply to @johnbishop "Hello Roger @gabyroger, Welcome to Connect. You mentioned Orthostatic HP was ruled out. From what I've..." + (show)
@johnbishop

Hello Roger @gabyroger, Welcome to Connect. You mentioned Orthostatic HP was ruled out. From what I've read, I think Postural orthostatic tachycardia syndrome (POTS) is another condition that can affect your blood flow and cause dizziness when standing up. Here's some information I found that sounds similar to the symptoms you describe.

"Dizziness or light-headedness when standing occurs in about 20% of older people. It is more common among people with coexisting disorders, especially high blood pressure, and among residents of long-term care facilities. Many falls may result from dizziness when standing. Older people should avoid prolonged standing.

The increased incidence in older people is due to decreases in the responsiveness of the receptors that manage blood pressure plus increases in arterial wall stiffness, which make it more difficult for arteries to move more blood to increase blood pressure. Decreases in receptor responsiveness delay the normal heart and blood vessel responses to standing. Paradoxically, high blood pressure, which is more common among older people, may contribute to poor receptor sensitivity, increasing vulnerability to dizziness when standing." --- Dizziness or Light-Headedness When Standing Up: https://www.merckmanuals.com/home/heart-and-blood-vessel-disorders/symptoms-of-heart-and-blood-vessel-disorders/dizziness-or-light-headedness-when-standing-up

Postural Orthostatic Tachycardia Syndrome (POTS): https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots

There is also a discussion on POTS if you want to view what others have shared --- POTS - postural orthostatic tachycardia syndrome: https://connect.mayoclinic.org/discussion/pots-postural-orthostatic-tachycardia-syndrome/

Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

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I am impressed by your response. For over 6 months and over 6 doctors not a one has mentioned POTS or even come close even though I told them that my bp goes up as well as hrwhen I stand even from a sitting position. We have tested this at least 10 times. The dizziness, lightheadedness persists as long as I am standing. I also have lumbar stenosis, fairly advanced at L3-4-5 which obviates surgery. This condition keeps me bent over when I stand and I have to use 2 ski poles for support when I stand. I had a sailing buddy who had a similar fate and. Ended his life due to the pain and disability.
I had a follow-up MRI with a neurologist today who could not offer me more than A cortisone shot in the spine and physical therapy . I am very disappointed. I am 79 and until 7 months ago enjoyed small boat sailing and racing as well as rowing my rowing shell.
I will definitely follow up on your suggestion.
BTW-I was a research pharmacologist back in the 70’s and got into management at Ciba. Pharm and retired from GlaxoSmithKline 15 years ago
Thanks again . Maybe the Mayo is in my future.

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Evie | @archermac15 | Feb 25, 2022
In reply to @pacer3702 "The ferritin level should be 75 ug/L or higher to provide relief of RLS. I bought..." + (show)
@pacer3702

The ferritin level should be 75 ug/L or higher to provide relief of RLS. I bought the iron supplement at Walgreens. The iron should only be taken under medical supervision and if the ferritin level is below 75. (It's not a good idea to supplement with iron unless there is a definite medical indication.)

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I agree. I just got my blood tested today. I'm afraid to put anything new in my body since the Emgality caused me chest pain and the Gabapentin caused me a racing heart beat and even more chest pain. I am in so much pain that I have taken extra pain medication. Its in my legs and arms and not just at night, but all day. I can't stand the pain and now my chest is hurting with all the walking. I don't know what to do.

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pacer3702 | @pacer3702 | Feb 25, 2022

Have you tried a heating pad? I hope you find relief soon!

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margaretob | @margaretob | Feb 26, 2022

legs crippling up, no feeling in feet, charley horses frequently. WHAT CAN I TAKE???? had bloodwork done and diabetes is under control with INSULIN and GLUCOPHAGE twice morning and evening...M.

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1 reply
margaretob | @margaretob | Feb 26, 2022

waiting for the results of the bloodwork...I feel a decided lack of energy sometimes...am 77 and a half...M.

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oceanlady22 | @oceanlady22 | Feb 26, 2022

Please check your leg pain for PAD Peripheral Artery Disease. My blood pressure is very high and all I was concerned about was my cancer & neuropathy caused by chemotherapy. Now the pain in my leg is severe. Dr. is saying the leg pain might be PAD. God Bless you and keep you strong & pain free.

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