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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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My feet are numb and tingling and ache goes up my legs too
I’m sheridana and I need help with my numb feet
Hi @sheridana, Welcome to Connect. I also have numbness in my feet and legs with my idiopathic small fiber peripheral neuropathy. I'm fortunate not to have the terrible pain that most folks with neuropathy have and it sounds like you have similar symptoms with your neuropathy. You might find the following discussions helpful:
-- Neuropathy with numbness: https://connect.mayoclinic.org/discussion/neuropathy-with-numbness/
-- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
What's the main difficulty you have due to the numbness in your feet? Mine is poor balance.
I have had 3 EMG's and some genetic testing because my father has many of the same symptoms. Best diagnosis so far is idiopathic axonal polyperipheral neuropathy.
Welcome @dwsouthwick, Looking for support and what helps is the very best thing we can do to help ourselves when they tell us there's no cure we just have to wait to see how it progresses. That's really what brought me to Connect back in 2016 after being diagnosed with idiopathic small fiber PN. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.
If you haven't already seen the site and you want to learn more about Neuropathy, the Foundation for Peripheral Neuropathy is a great place to start learning more - https://www.foundationforpn.org/. They also have a YouTube channel where you can find their many webinars on different neuropathies and treatments - https://www.youtube.com/@foundationforperipheralneu4122.
@artemis1886 has mentioned having axonal sensorimotor polyperipherial neuropathy and may be able to share some experience with you. Have you done any research on complementary or alternative therapies for neuropathy?
A number of MRIs, a Neurosurgeon as it was thought to be spine problems, he was the first to say neuropathy. He sent me to a Synapse Neurologist his test were NCS and EMG he agreed but could find nothing amiss, he then sent me to a Haemotologist with some suggestions re white blood cells and protein. He took I'm sure half my blood and also agreed with Neuropathy but also could not find what the cause was. So here I am a idiopathic. @wenner