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Profile picture for Colleen Young, Connect Director
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.

Profile picture for catro
catro | @catro | 20 hours ago

Hi Dorothy, just getting to our advanced old age demonstrates resilience and fortitude. Thank you for your reply. I hope you like being in assisted living. My wife (86) and I are still in the same house we have had for 30+ years and hope to be able to stay here for a long time. I still drive which is essential because we aren’t in walking distance of any shopping.

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laporta | @laporta | 6 hours ago
In reply to @ltanakeyowma "I was diagnosed with anti-MAG Peripheral Neuropathy. I’ve had 2 treatments of Rituximab which my Rheumatologist..." + (show)
Profile picture for ltanakeyowma @ltanakeyowma

I was diagnosed with anti-MAG Peripheral Neuropathy. I’ve had 2 treatments of Rituximab which my Rheumatologist thinks might even help my RA. I’m currently doing another treatment as they can do it every 6 months. I don’t feel any improvement but I’m hoping this treatment is helping my condition from getting worse.

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@ltanakeyowma I have had three Rituximab infusions sessions so far for my anti-MAG condition. I would say that I am 15% better now. I credit my daily workouts and p.t. sessions for much of it. Everyone is different in terms of the timeline effectiveness. Also, if the Rituximab is helping to prevent a slide-back, that's a good thing. All the best.

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tammy65 | @tammy65 | 1 hour ago
In reply to @revdorth "@catro hi charlie - i am 89 and dealing with pn much the same way -..." + (show)
Profile picture for revdorth @revdorth

@catro hi charlie - i am 89 and dealing with pn much the same way - i have had neuropathy in the feet for years but it was mainly a tingle and a bit of rigidness in the toes at night and i didnt pay attention and hiked, walked, etc for years. It got much worse this year and has progressed to my calves and often to my arms in just a few months. There are not enough neurologists in Denver - it is a 6 month wait to see one and then they often are not taking new patients plus since there is no cure they arent interested. I am amazed I have reached this age in as good a shape as I am = slower and often very tired with little energy which is the worst but i keep going. I have no car so must continue to walk even if just to the bus. I will be moving in a month to senior housing which has an indoor heated pool open all year so I am hoping daily water aerobics will help keep me going. I read this site for information - someone mentioned rubbing the feet with VIcks and it does help at night. Other than that, it is just onward and upward. Dorothy

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@revdorth - it seems that the best we can do is keep moving as best we can when we can. I find that some days are better than others but it’s always worse in the evening/night. That’s when the burning sets in and my calf seizes up. I am noticing that while we all have a different variation of the same affliction, no one seems to be getting any professional advice or assistance on how to improve our quality of life. As you said, no cure - no interest. Therefore, we have to fend for ourselves. My only “lesson learned” is that I feel better on the days I exercise and/or walk. I’ve been prescribed a n anti-seizure medication called VIMPAT (in Spain) that has helped considerably with the muscle seizures. Good luck with your upcoming move. It sounds really nice 😊

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tammy65 | @tammy65 | 59 minutes ago
In reply to @stangreen "@tammy65, it is simply a living hell. There is NOTHING that helps me. I have found..." + (show)
Profile picture for stangreen @stangreen

@tammy65, it is simply a living hell. There is NOTHING that helps me. I have found its impact to be progressively worse after completing Folfirinox. The afternoons and evenings are infinitely worse, if that is even possible. My neuropathy is a basket of everything in my hands and feet. I find myself dropping things, losing my balance, and falling on occasion. The tips of my fingers are numb, while burning at the same time. Also, when touching anything, I feel electric shocks. The numbness from the knees down reaches a peak in the toes. I also think my left foot is beginning to drop. There is a feeling of swelling and sand at the bottom of the feet, particularly in the front. Driving is becoming problematic given the almost non-existent sensation, I am not sure how it all ends. Stan

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@stangreen - I am so sorry that you are suffering like this. Neuropathy is an evil affliction and I wouldn’t wish it on anyone. Please know that the people in this group see you and understand you. While we can’t take away your suffering, we are here to listen and support as best we can.

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