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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@gowri59

Hello
I’ve been having pricking pins and needles sensation for the past three months in my hands and legs. All blood tests came back normal except for B6 which was elevated. Doctor asked me to stop it. I’ve been taking acid reflux medicines for many years now. Especially Dexilant. Could this be causing it? I stopped my multi vitamins that had b6 in it. Would love to hear from people who’ve had similar experiences. Thanks much.

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Anybody Try Tens? My feet are so numb I can't feel the spiking even at the highest setting. Thanks

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@shomeier1

Hi. My name is Sara and I've been living with neuropathy for over at least 7 years now. I've been taking Gabapentin for at least 5 years and now my dose is up to 1200mg a day and it still doesn't even help a bit. The only time not in pain is when I knock my self out at night taking muscle relaxers etc. How does anyone get relief? I can't stand it any longer.

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Hi Sara,
I have severe neuropathy for the last 4 years. The constant lightning strikes throughout my legs subsided a bit but still live with the discomfort and pain especially my feet. I have the painful walking conditions and feet remain numb including tingling. I am unable to be bare footed. The doctors, specialist, neurologist, etc.. are unable to cure the condition. I spent thousands and thousands of dollars but they are unable to cure it only provide gabapentin, juniva, etc... I spent days, months, years to find better solutions even other countries but unfortunately I am unable to locate any support. I have ordered a number for creams, etc.. throughout the internet but I always have to return the items. I will not spend another dime on doctor appointments. Now, I do buy cans of vapor rub to help with the relief but its only temporary. I pay approx. $30 a week. I am exhausted buying other creams, meds, which do not work. It is sad that we can place a man on the moon but NO cure for neuropathy. I adopted a German Shepherd dog for encouragement and we walk 4 times a week which tends to help more so than before.
Good luck !

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@paktoledo

I really don't know! My doctor took me off of a medication too for G.E.R.D., which I think it did not help my neuropathy. It was
Omeprazole 20mg in the A.M.
I think you have an excellent questions because so many meds can affect nerve damage, especially in your feet first! I sure hope some can answer this question. I am an amateur and feel I can't answer this question, Although, my Neurologist, suggested my neuropathy can be attributed to some of my numbness. Plaquenil for my Lupus.
Hope this helps someone! Good Luck! Pat K.

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I’ve been taking Omeprazole for many years now for heartburn. I have neuropathy in my arm tingling sensation but never connected to Omeprazole. 🤔 I’ve had cancer in the past so may be connected to my symptoms. Good to know I may try eliminating Omeprazole for few weeks and see if there’s a change 😲

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@rosy54

I’ve been taking Omeprazole for many years now for heartburn. I have neuropathy in my arm tingling sensation but never connected to Omeprazole. 🤔 I’ve had cancer in the past so may be connected to my symptoms. Good to know I may try eliminating Omeprazole for few weeks and see if there’s a change 😲

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Let your M.D. know what you are doing..Just in case he wants to you off it himself.
Just to be safe!
Good Luck! Pat

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@gowri59

Hello
I’ve been having pricking pins and needles sensation for the past three months in my hands and legs. All blood tests came back normal except for B6 which was elevated. Doctor asked me to stop it. I’ve been taking acid reflux medicines for many years now. Especially Dexilant. Could this be causing it? I stopped my multi vitamins that had b6 in it. Would love to hear from people who’ve had similar experiences. Thanks much.

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Hello @gowri59 and welcome to Mayo Clinic Connect. I wanted to connect you with other members who may be able to share your experience, so you will notice I have moved your post into our welcome discussion for those seeking neuropathy support, which you can find here:
- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Members @paktoledo and @gba have both since joined you.

Have you consulted your doctor about this suspicion?

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I am 87 years old Two years ago I was diagnosed with sciatica. I have had two laminectomy‘s on my spine to correct pinched nerves. About one year ago I was diagnosed with neuropathy based on an EMG test, on 4/22/22. I have researched possible causes of my neuropathy and have concluded that I have CMT neuropathy, however, my neurologist can not confirm my conclusion. I have two distinct characteristics of CMT neuropathy, hammertoes, and a high arch, and have found that my father had both of those characteristics.
Of all of my research on neuropathy the one generalization for treatment is exercise to prevent the muscles in the legs from atrophy. I am doing exercise, 5x/week and believe I am staying about the same as far as my legs muscles and balance. I am very interested in finding out from other neuropathy patients their experiences. I have been an athlete all of my life , including eight years of football the last four in college. Therefore, I believe I have an understanding of exercise and conditioning, hopefully useful for my neuropathy. I have only very recently discovered mayo clinic connect, and am anxious to hear and participate in conversations on leg neuropathy. I am currently taking gabapentin , which handles the painful symptoms of neuropathy for me.
Thank you for the opportunity to submit my comments .

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Thanks! Cc. My MD I have Rheumatoid and Osteoarthritis - but he has no ideas why my Immune system/joints ache all over my body!
Says if I have Neuropathy there’s no cure! AP Codein helps a bit but makes me dizzy and I can barely walk! Any suggestions?

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@davidhpress

Thank you for your information. I think I’ll add the mushrooms to my daily supplements. I have found that Benfotiamine, alpha lipoic acid, primrose oil, acetyl l-carnitine and grape seeds supplements on top of my prescription Lyrica have largely eliminated at least the sharpest of the tingling. I did find a supplement that puts most of these together in one liquid instead of all the pills. I just received a bottle and will be switching over in a day or two. I’ll report back here if it works well. I’m hopeful the mushrooms will work well for me. Thanks for sharing your information.

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I don’t see where the mushrooms are discussed.

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@davidpn

I don’t see where the mushrooms are discussed.

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Someone earlier recommended Lion’s Mane mushroom supplement. I’ve tried it now only for a few days and have noticed no effect. I think it will not be added to my regular regimen of supplements.

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@davidhpress

Someone earlier recommended Lion’s Mane mushroom supplement. I’ve tried it now only for a few days and have noticed no effect. I think it will not be added to my regular regimen of supplements.

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The Foundation for Peripheral Neuropathy has a list of supplements that studies have shown to help neuropathy here (it's at page 5 of the document) - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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