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?

@safetyguy72

Thanks, happy to find this group. I have had idiopathic neuropathy for at least 5 years. So far it has not progressed beyond the pain in feet. I stoped going to my Neurologist this year, because there wasn’t anything he could do. Went through pain management for two years with no relief. I have come to the realization that I will live with this the rest of my life. Sorry if that discourages anyone, and hopefully a new treatment will be discovered.

Just lately I get the sensation that water is running down my legs. I have actually reached down to see if they are wet! Has anyone experienced this and is it something I need to relate to my GP or neurologist?

TIA

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Hi @safetyguy72 I am married to someone who has had neuropathic burning in her feet from chemo for 6 years. Early last year it kicked up to another gear and she has been in much worse shape than before. She tried gabapentin and it did not help her. She has not tried other drugs so far as she is very susceptible to side effects. She might eventually try getting a nerve stimulator which several people who post here have tried with varying success. If you would like to read posts by various people who discuss their experiences you can put the word 'stimulator' into the search bar at the top of this (or any) page and you will see a lot of them, which you can read as you like. I have been hopeful for a new treatment coming online related to sodium channel blockers which can block the pain signals from being perceived by the brain. I did a write up on that myself which you can find at this link:
https://connect.mayoclinic.org/discussion/vgsds-a-potential-breakthrough-on-the-horizon-for-neuropathy-pain/?utm_campaign=search
In case you are interested I have heard of other things for people who want to try to get adventurous. I do not know personally anyone who swears by any of these, but I have read positive anecdotal accounts about some of them:

-scrambler therapy using a device by Calmare company from Italy
-acupuncture
-chinese medicine
-infrared light therapy
-homeopathic remedies made by a naturopathic doctor

I hope you find relief for yourself. It's turning out to be quite a journey for my wife and I, and not a terribly pleasant one at that. If you have any other questions or comments feel free to post them here. You will find an attentive and sympathetic audience with this group of very excellent fellow pain veterans.

Best, Hank

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I have peripheral neuropathy – idiopathic sensorimotor axonal neuropathy. How much b12 is recommended daily? Thank you.

Liked by rwinney, HankB

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@otisco

I have peripheral neuropathy – idiopathic sensorimotor axonal neuropathy. How much b12 is recommended daily? Thank you.

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Hello @otisco, Welcome to Connect. I think the answer to your question could be a little different for each of us. I have idiopathic small fiber peripheral neuropathy and like others I take a lot of the same supplements others do. There is another discussion where members have shared their neuropathy journey and what has helped them — Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Here is an article that lists supplements and vitamins for neuropathy — Which supplements can help with neuropathy?: https://www.medicalnewstoday.com/articles/326917

Are you able to share a little more about your symptoms and any current treatment you are on?

Liked by HankB

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@otisco

I have peripheral neuropathy – idiopathic sensorimotor axonal neuropathy. How much b12 is recommended daily? Thank you.

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After bloodwork I was told 2000 mcg. The next bloodwork indicated my level was too high so I needed to reduce it to 1000 mcg. a day. **METHYLCOBALAMIN is the recommended form and My doctor also recommended the sub lingual form. I get the brand Solgar from Amazon. Apparently as we age we need to supplement B12. Unfortunately this did not seem to affect my peripheral neuropathy symptoms, but I still take it

Liked by fiesty76

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I was told by both my neurologist and my internist that’s if my B12 levels were within normal range I did not need to supplement; I am 73 and I do feel that I get an adequate amount through my diet. I have been told by my neuro that a high level of B6 can negatively affect neuropathy so I occasionally take a low dose B complex. Helen

Liked by fiesty76, HankB

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@wisfloj

After bloodwork I was told 2000 mcg. The next bloodwork indicated my level was too high so I needed to reduce it to 1000 mcg. a day. **METHYLCOBALAMIN is the recommended form and My doctor also recommended the sub lingual form. I get the brand Solgar from Amazon. Apparently as we age we need to supplement B12. Unfortunately this did not seem to affect my peripheral neuropathy symptoms, but I still take it

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@wisfloj. Are you a vegetarian or vegan? My friend is a vegan and he takes sublingual B12. Most vegetarians and vegans are B12 deficient because they cannot get enough B12 from their diet. I am eating less meat and I take 1000mcg, the same form as yours. It's a lozenge that dissolves in my mouth.

Liked by fiesty76, HankB

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@otisco. As each of us is unique, you really should get a blood test and speak with your doctor about it. I have sfpn, and blood tests consistently show B is within normal range. Many things can be harmful if dosage is too high.

Jim

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@otisco

I have peripheral neuropathy – idiopathic sensorimotor axonal neuropathy. How much b12 is recommended daily? Thank you.

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@otisco I have Small Fiber Peripheral Polyneuropathy as a result from B12 deficiency which slowly developed through my forties. Now that I've been regulated through injections, I take oral B12 2,000 mcg per day and a daily B Complex with 30 mcg B6. Too much B6 creates PN, too little B12 creates PN, it's a balancing act, one that your Dr. should be aware of and advise on. Dangerous area. Good luck.

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I have been diagnosed with small fiber idiopathic peripheral neuropathy. I would appreciate hearing about any experience with immunoglobulin treatments.

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@ginger7

I have been diagnosed with small fiber idiopathic peripheral neuropathy. I would appreciate hearing about any experience with immunoglobulin treatments.

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Hello @ginger7, Welcome to Mayo Clinic Connect. There is another discussion you may be interested in reading and learning what others have shared about IVIG Infustions: https://connect.mayoclinic.org/discussion/ivig-infusions/

@sparshall, @arnrob, @jimhd and others may be able to share their experience with IVIG treatments with you.

Has your doctor recommended the treatments for you?

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@johnbishop

Hello @ginger7, Welcome to Mayo Clinic Connect. There is another discussion you may be interested in reading and learning what others have shared about IVIG Infustions: https://connect.mayoclinic.org/discussion/ivig-infusions/

@sparshall, @arnrob, @jimhd and others may be able to share their experience with IVIG treatments with you.

Has your doctor recommended the treatments for you?

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Yes.

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Hi, my name is John. I am 67 years old. This is my first post. I have not been diagnosed with Peripheral Neurology (PN). In the last several weeks I have noticed some "burning" sensation on my feet and ankles, particularly when I lie in bed at night. So I went to Dr. Google and it pointed me to PN. I mentioned it to my doctor the other day since he indicated that I have prediabetes. He said to keep an eye on it and he indicated that there is medication for that. Any initial thoughts and comments for a newbie are greatly appreciated. Thank you Colleen and John for moderating this site.

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would be interesting to know what medication he is referring to: for the PN or for the prediabetes — ask questions now

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@lois6524

would be interesting to know what medication he is referring to: for the PN or for the prediabetes — ask questions now

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I have a call into his office to see what medication he was thinking about. Is there a "hallmark" medication that is commonly prescribed?

Liked by fiesty76

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@testudo

Hi, my name is John. I am 67 years old. This is my first post. I have not been diagnosed with Peripheral Neurology (PN). In the last several weeks I have noticed some "burning" sensation on my feet and ankles, particularly when I lie in bed at night. So I went to Dr. Google and it pointed me to PN. I mentioned it to my doctor the other day since he indicated that I have prediabetes. He said to keep an eye on it and he indicated that there is medication for that. Any initial thoughts and comments for a newbie are greatly appreciated. Thank you Colleen and John for moderating this site.

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Hello John and welcome to Connect! I am fairly new and still not proficient in getting around but am making progress.

I hope and pray that you learn as much as I 'm learning here on Connect and I know you will receive a great deal of support and encouragement.

Many blessings, Sunnyflower

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