Living with Neuropathy - Welcome to the group

Wondering if a foot vibrator may help improve my foot control while walking

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

Thank you all so much for your kind & helpful replies. My emg report came today, means nothing to me. 1. NCS showed abnormalities of the bilateral sural sensory response. 2. EMG testing showed CRDs of the left IP muscle.
3. Sensory neuropathy. Thanks for any input you might have!!!

My name is Vic.I suffer from peripheral neuropathy for about 15 years now take 2400 mg of Gabapentin daily. Feet pretty numb and now beginning to move to my fingertips. Dr. Is no help.. I believe that cause originally was a Statin Zocor switched to lipitor the last 10 years likely no difference.

Thank you all so much for your kind & helpful replies. My emg report came today, means nothing to me. 1. NCS showed abnormalities of the bilateral sural sensory response. 2. EMG testing showed CRDs of the left IP muscle.
3. Sensory neuropathy. Thanks for any input you might have!!!

Thank you Colleen and John, I'm hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it's a team approach and I'm a vital player. It's not easy, in fact it's damn hard a lot of the time and some days I wonder how I'm going to get through it but I don't have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I'm in the process of undergoing treatment with neurosurgery planned in the not to distant future. It's hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There's no guarantees and it's still a long road to travel but I'm crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven't delved into it too much due to the complexity, it's helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I've been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you're made to feel it's in your head. But I'm not giving up, I can't give up and through perseverance I've found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

I just found out why I've been feeling more pain ... I picked up my rx for gabapentin at the usual pharmacy but it looked different - it's a large white tablet, it's usually a yellow-beige capsule. I asked the pharmacist why it looks different -- she read the labels and said that it's 600 mg, the other is 400 mg. My doctor changed my rx to 600 mg months ago and sent the rx to the pharmacy but they kept filling the old rx until it ran out without asking me or the doctor if they were supposed to discontinue the old one and start the new one right away. The old rx just ran out so they finally filled the new one -- perhaps I will feel less pain in a day or two. Do any of you have a good system for staying on top of your medications, doctors, appointments, and pharmacists? Something that's portable, easy to update, easy to read ... ? Peggy

I just found out why I've been feeling more pain ... I picked up my rx for gabapentin at the usual pharmacy but it looked different - it's a large white tablet, it's usually a yellow-beige capsule. I asked the pharmacist why it looks different -- she read the labels and said that it's 600 mg, the other is 400 mg. My doctor changed my rx to 600 mg months ago and sent the rx to the pharmacy but they kept filling the old rx until it ran out without asking me or the doctor if they were supposed to discontinue the old one and start the new one right away. The old rx just ran out so they finally filled the new one -- perhaps I will feel less pain in a day or two. Do any of you have a good system for staying on top of your medications, doctors, appointments, and pharmacists? Something that's portable, easy to update, easy to read ... ? Peggy