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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?
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Is there an idiopathic neuropathy group? I have no feeling from my knees down. It is also coupled with Rhomboencephalasynapsis RES, excuse the spelling?
Hello @billu1, Welcome to Connect. There is no special support group for idiopathic neuropathy but there are 120+ discussions on idiopathic neuropathy in the Neuropathy Support group. Here's a search link that lists the different groups if you would like to scan through them to see what is available - https://connect.mayoclinic.org/search/discussions/?search=idiopathic%20neuropathy.
I didn't see any members who have posted about Rhombencephalosynapsis (RES) but hopefully someone with experience will see your post and respond. I did find a recent research paper if you haven't already seen it.
-- Rare case of rhombencephalosynapsis (RES); Case report and literature review
https://www.sciencedirect.com/science/article/pii/S2666459325000253
The Foundation for Peripheral Neuropathy is a great source of information for living with neuropathy - https://www.foundationforpn.org/living-well/.
What is the most difficult symptom for you to manage?
I have been researching vitamin B1 Thiamine and its other form Benfotiamine. Has anyone any experience of using these for peripheral neuropathy
Falling, I have moved from a cane to a Rolator for long distances and nothing while at home, (I live in a small house) most of the time. I have had an EMG, and after test the Dr. said, "you have neuropathy" and I felt like saying "Duh". but refrained since I already had one a while back. RES as identified is a very rare genetic disorder. It is in back part of brain. and it affects motion and stability. There is no treatment for it except doing a spinal Tap.
Hi Colleen, thank you for welcoming us to this group. I am from Canada and I have feet neuropathy for 15 years now.
I am glad I can read about other people experience with this illness and exchange info and news.
I would suggest you visit http://www.nerverenew.com. I have been using their supplements for several years and I believe they have been able to keep my P.N. (15+ years) under control. Best wishes.
I have neuropathy in both legs and feet, but I also have a lot of other issues, so no doctor has addressed this problem.
Gabapent and Hydrocone have kept me moving, exercising is also important
Gabapentin did nothing to help me on symptoms. I’m still looking for a replacement. Tried Ropinerol to no better luck. Am now on Cymbalta, which seems to have some effect.
Hi. My name is Steve.
I haven't been professionally diagnosed with Neuropathy, but I certainly have the symptoms. Constant numbness in my toes, (ironically, 1 toe on each foot has sensation!) and in the balls of my feet, along with periodic tingling.
I don't have any pain, aside from an occasional sharp twinge of pain in one of my toes.
My GP thinks my neuropathy was brought on by my alcohol consumption. I've consumed only wine, although more than doctors say should be consumed. I think it was due to the use of a TENS unit for my aching ankles. I used it for about 2 months, every day for 30 minutes. I was using it at its highest level and one day, woke up with numb toes!
I've read that TENS units can cause neuropathy. I'd be interested in your thoughts on this and whether there is any kind if treatment specific to its cause. (I have cut back on the wine, just in case.)