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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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Thanks so much for this group. Until I got the Mayo email, I had no idea there was a support group!
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2 ReactionsHi to all! Like many others, I want to learn more about any ways to mitigate the symptoms and deal with it better. 13 years after being diagnosed, I keep waiting for it to max out, but apparently, it keeps getting worse.
I have it only in both feet and when my neurologist first tested me, he also did an extensive set of bloodwork. Turns out I also have MGUS, so I’m glad he associated the two conditions so I could hook up with a hematologist.
I plan to read everything already posted to see if there’s any relief in sight. I can’t take the usual drugs that help because they’re metabolized in the kidneys and I only have one. Happy to have found this group!
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4 ReactionsCbd oil with terpines works take full dropper 1-2 consistently 3 months 2-3xs daily ! This works for many!
I stopped all pain meds a very good Cbd oil will maybe help u 2 !
I also take alpha lipolic acid 2 -600 to 900 mg natrol tablets at nites an the Cbd balm or ointment and massage in feet!
Then sleep . Also a good folic acid! Try these
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1 ReactionHello @larrymcj and @zebra1222, Welcome to Connect. Glad to see you are both searching for answers to help with your neuropathy symptoms. I thought I would share this link to the Foundation for Peripheral Neuropathy's list of complementary and alternative treatments in case you haven't seen it.
-- Peripheral Neuropathy Treatments:
https://www.foundationforpn.org/treatments/
You might also like to read through the Member Neuropathy Journey Stories: What's Yours? discussion here:
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Hoping you find some answers!
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3 ReactionsGlad to find this group. Just ordered bentothiamine (sp?) for my neuropathy. Will report on its effectiveness.
I've had neuropathy for over 15 years and tried all sorts of things, even getting injections of vitamins between the toes which did not help. As yet I am not diabetic but prediabetic. I Look forward to hearing from members.
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1 ReactionThanks, but like many of the actual drugs used to mitigate the symptoms, alpha lipolic acid should not be taken if you have only one kidney (according to my doctor).
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2 ReactionsWelcome @ellbee, I've carried that pre-diabetic tag with me for 20+ years also and have recently thought it may have something to do with my idiopathic small fiber peripheral neuropathy. So, I'm working on getting out of the pre-diabetes diagnosis after doing a little reading on the metabolic syndrome which fits most people in the pre-diabetes category.
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
Do you have pain with your neuropathy symptoms?
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2 Reactionsgbrodnan1945 Does Metanx work idiopathic peripheral nuropathy. I am 77 and have been using it for 10 years with limited success.
Welcome @daimudan, We are happy you've found us!! There are a lot of different discussions in the Neuropathy group that you might find helpful. Here's the complete list of discussions -
https://connect.mayoclinic.org/group/neuropathy/.
Also, I thought I would share 2 of my favorite sites for learning more about neuropathy in case you haven't seen them:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
Do you mind sharing a little more about your diagnosis and any treatments you've tried?
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2 ReactionsHi @gbrodnan1945, Welcome to Connect. I have no medical training or background but I think Metanx is a vitamin supplement that has to be prescribed by a doctor and is used mostly to help people with diabetes with neuropathy. I do take supplements to help, also with limited success but I do think it's slowed or possibly stopped the progression of my idiopathic small fiber PN. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.
Early on I learned about Metanx but decided not to try it because it contains a lot of vitamin B6 which can also cause neuropathy if you have an issue with too much B6 in your system. There is another small discussion on Metanx here - https://connect.mayoclinic.org/discussion/metanx/
Do you have pain with your neuropathy?
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