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.

wilcy | @wilcy | Jun 10, 2020

In reply to @vik "Wondering if a foot vibrator may help improve my foot control while walking" + (show)

Didn’t help me

fuzzy1southernga | @fuzzy1southernga | Jun 10, 2020

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

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!!!

John, Volunteer Mentor | @johnbishop | Jun 10, 2020

In reply to @fuzzy1southernga "Thank you all so much for your kind & helpful replies. My emg report came today,..." + (show)

Hi @fuzzy1southernga, When it comes to interpreting test results I think your best bet is to give your doctor a call and ask him if he can explain the results to you in layman's terms which is what I do if something is not clear.

John, Volunteer Mentor | @johnbishop | Jun 10, 2020

In reply to @vik "My name is Vic.I suffer from peripheral neuropathy for about 15 years now take 2400 mg..." + (show)

Hi Vic @vik, Welcome to Mayo Clinic Connect. Sorry to hear that your neuropathy seems to be progressing to your finger tips. Gabapentin and other drugs prescribed for neuropathy only address the pain associated with neuropathy and do nothing to help with the numbess. Do you also have pain with your peripheral neuropathy?

You may also be interested in the following discussion where other members have shared their neuropathy story along with what helps them. Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

avmcbellar | @avmcbellar | Jun 10, 2020

In reply to @fuzzy1southernga "Thank you all so much for your kind & helpful replies. My emg report came today,..." + (show)

Hi @fuzzy1southernga I agree with @johnbishop. The doctor ordering the labs is completely responsible for explainIng the results. He or she is receiving payment to advise you. Let them do their job. Hope you get answers.

fuzzy1southernga | @fuzzy1southernga | Jun 10, 2020

Of course you are absolutely correct. My results were on my portal, I do have an up-coming appointment. Thanks for your reply.

pfbacon | @pfbacon | Jun 12, 2020

In reply to @sallymagint "Thank you Colleen and John, I'm hoping I can learn as much as possible about Neuropathy..." + (show)

@sallymagint

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

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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

mayofeb2020 | @mayofeb2020 | Jun 12, 2020

In reply to @pfbacon "I just found out why I've been feeling more pain ... I picked up my rx..." + (show)

@pfbacon. This is really unheard of. The pharmacy is supposed to follow doctor's prescription. If they do not have the higher dosage, they should let your doctor and you know. This is very dangerous. Maybe you should change pharmacy. One time my local CVS gave me prescription for another person. Fortunately I caught it right then and there. I never went back. May I suggest you check the label of the drug when you pick up your prescription to make sure it's the right dosage. I would also suggest you contact your doctor about this. I hope you feel better soon.

steeldove | @steeldove | Jun 12, 2020

In reply to @pfbacon "I just found out why I've been feeling more pain ... I picked up my rx..." + (show)

@pfbacon Wow! That's unacceptable service on the part of the pharmacy. Definitely time to find a better pharmacy service.

oldkarl | @oldkarl | Jun 12, 2020

In reply to @pfbacon "I just found out why I've been feeling more pain ... I picked up my rx..." + (show)

@pfbacon Peggy, I do have my own system, but it takes a lot more time and is much more specific than most. I take about 15 different meds, so I have to be careful. Each time I get one filled, I make sure I know exactly how it is supposed to help me. To do that, I daily record: Mornings-- Glucose readings with insulin dosages, thyroxine tab, Methotrexate on Monday, blood pressure, temperature, protein foam on the urine, any blood in urine, weight, acetaminophen, any unusual pain, At noon record just the GL and insulin, acetaminophen and pain . Before dinner, acetaminophen PM. Bedtime: the BP readings, GL daily readings plus averages for today, last seven days, last 30 days, last 90 days. And more over the counter stuff. Most of my heart meds I take at bedtime. Works better, and will not counteract the levothyroxine or other meds. And every day I spend a few minutes or an hour adding to my internet record at https://bit.Ly/2jtypp9, available to anyone. During the time I am working on it I try to image what each med impacts, and whether or not it is helping. I gave up on gabapentin and several heart meds because they had no impact on me. And I moved meds around to make sure I was taking them properly. Anyway, it takes about an hour to 1 1/2 to get up and showered and dressed each morning, plus time to sort pills into trays each week, plus re-order meds, supplies, check appointments, etc. But I am still ahead of the game. When I was born 80 years ago, the doc told my parents I would never see my third birthday because of my muscular dystrophy, and my wife has been told several times I would not live until morning.