No wonder there is so little being done about Neuropathy!

Posted by steeldove @steeldove, Nov 7, 2020

When neuropathy isn't even listed as a major neurological disorder:https://jamanetwork.com/journals/jamaneurology/fullarticle/2772579

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

@sunnyflower

Hello Margaret, I am Sunnyflower. Wow this info is fantastic!! Thanks so much! I wonder if any neurologists know about this? Warmest wishes, Sunnyflower

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Hi Sunnyflower, I learned about sarm1's role in nerve death and neuropathy from a webinar put on by the Foundation for Peripheral Neuropathy. The webinar concerned neuropathy arising after chemotherapy. I've never had chemotherapy but have been on plenty of other drugs that can be toxic, so I thought I might learn something useful.

Because Eli Lilly has acquired the technology from startup company Disarm, there are now deeper pockets to identify sarm1 inhibitors. My guess is that it will take years to identify and run clinical trials with candidate inhibitors.

However, the M.D. speakers also mentioned something else that may be useful in the short Term. Sarm1 is an enzyme that, among other things, breaks down NAD+ in damaged neurons. NAD+ is a type of energy currency used by neurons to carry out normal functions. If the neuron is depleted of NAD+, it kills the neuron causing pain along the way.

The doctors mentioned that there is a new supplement available called Tru Niagen or nicotinamide riboside. In your neurons, it is converted to NAD+, thereby compensating for the loss of NAD+ caused by activated sarm1. I've just started taking it. I have no idea if it will work. It's supposed to take 4-8 weeks. I've tried many diets, supplements and treatments for my neuropathy, so what's one more?

Re neuroplasticity, I underwent neurofeedback training for 2 years for epilepsy. It absolutely worked to help me bring my seizures under control. Unfortunately, it did nothing for my pain. Neuroplasticity/neurofeedback is a very useful tool. Make sure you get it from a practitioner who is certified.

Best wishes.

Margaret

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@margaret10

Hi Sunnyflower, I learned about sarm1's role in nerve death and neuropathy from a webinar put on by the Foundation for Peripheral Neuropathy. The webinar concerned neuropathy arising after chemotherapy. I've never had chemotherapy but have been on plenty of other drugs that can be toxic, so I thought I might learn something useful.

Because Eli Lilly has acquired the technology from startup company Disarm, there are now deeper pockets to identify sarm1 inhibitors. My guess is that it will take years to identify and run clinical trials with candidate inhibitors.

However, the M.D. speakers also mentioned something else that may be useful in the short Term. Sarm1 is an enzyme that, among other things, breaks down NAD+ in damaged neurons. NAD+ is a type of energy currency used by neurons to carry out normal functions. If the neuron is depleted of NAD+, it kills the neuron causing pain along the way.

The doctors mentioned that there is a new supplement available called Tru Niagen or nicotinamide riboside. In your neurons, it is converted to NAD+, thereby compensating for the loss of NAD+ caused by activated sarm1. I've just started taking it. I have no idea if it will work. It's supposed to take 4-8 weeks. I've tried many diets, supplements and treatments for my neuropathy, so what's one more?

Re neuroplasticity, I underwent neurofeedback training for 2 years for epilepsy. It absolutely worked to help me bring my seizures under control. Unfortunately, it did nothing for my pain. Neuroplasticity/neurofeedback is a very useful tool. Make sure you get it from a practitioner who is certified.

Best wishes.

Margaret

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@margaret10
Hi Margaret, my wife and I have been taking Tru Niagen for about 6 or 7 years. She takes 300 mg every day, I take 450 mg, but only on certain occasions, mostly when I am going to do a lot of driving on a given day. We both take a number of supplements. With most of them it is not easy to notice their effect. With a few it is and Niagen is one of those. Whatever else it does for me, I notice a definite effect on me when I am driving. I am more alert, more focused, it is easier to focus for a long time, hours in fact. Driving, which is usually boring as heck actually becomes in some weird way interesting to me. Less than 450 mg and I don't seem to notice this as much. I take it with breakfast and notice its effect all day. It's important to take it with food.

I think for me it acts as a brain enhancer. The reason I do not take it every day is that on days when I am not driving I don't notice the overt effect as much. Right now the one day each week I always take it is when I am going to be driving for the Red Cross delivering blood to hospitals. I take it to be safe on those drives, to be alert on my drive.

It's not cheap, but I probably should still take it every day like my wife does. It's just that I view it more as a tool to use when needed. I think I worry that if I take it every day it won't work as well for me. I do not know this to be true, but I have formed a habit of this style of use. Now that I am writing this I am starting to think maybe I should start to take it every day for a while just to test my theory.

Anyway, since you mentioned it I thought I would give it an endorsement since I know it has had a positive effect for me. Hope you see benefits from it also.

Best, Hank

REPLY
@margaret10

Hi Sunnyflower, I learned about sarm1's role in nerve death and neuropathy from a webinar put on by the Foundation for Peripheral Neuropathy. The webinar concerned neuropathy arising after chemotherapy. I've never had chemotherapy but have been on plenty of other drugs that can be toxic, so I thought I might learn something useful.

Because Eli Lilly has acquired the technology from startup company Disarm, there are now deeper pockets to identify sarm1 inhibitors. My guess is that it will take years to identify and run clinical trials with candidate inhibitors.

However, the M.D. speakers also mentioned something else that may be useful in the short Term. Sarm1 is an enzyme that, among other things, breaks down NAD+ in damaged neurons. NAD+ is a type of energy currency used by neurons to carry out normal functions. If the neuron is depleted of NAD+, it kills the neuron causing pain along the way.

The doctors mentioned that there is a new supplement available called Tru Niagen or nicotinamide riboside. In your neurons, it is converted to NAD+, thereby compensating for the loss of NAD+ caused by activated sarm1. I've just started taking it. I have no idea if it will work. It's supposed to take 4-8 weeks. I've tried many diets, supplements and treatments for my neuropathy, so what's one more?

Re neuroplasticity, I underwent neurofeedback training for 2 years for epilepsy. It absolutely worked to help me bring my seizures under control. Unfortunately, it did nothing for my pain. Neuroplasticity/neurofeedback is a very useful tool. Make sure you get it from a practitioner who is certified.

Best wishes.

Margaret

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Margaret please keep us posted on the Tru Niagen and thank you for sharing!

REPLY
@jesfactsmon

@margaret10
Hi Margaret, my wife and I have been taking Tru Niagen for about 6 or 7 years. She takes 300 mg every day, I take 450 mg, but only on certain occasions, mostly when I am going to do a lot of driving on a given day. We both take a number of supplements. With most of them it is not easy to notice their effect. With a few it is and Niagen is one of those. Whatever else it does for me, I notice a definite effect on me when I am driving. I am more alert, more focused, it is easier to focus for a long time, hours in fact. Driving, which is usually boring as heck actually becomes in some weird way interesting to me. Less than 450 mg and I don't seem to notice this as much. I take it with breakfast and notice its effect all day. It's important to take it with food.

I think for me it acts as a brain enhancer. The reason I do not take it every day is that on days when I am not driving I don't notice the overt effect as much. Right now the one day each week I always take it is when I am going to be driving for the Red Cross delivering blood to hospitals. I take it to be safe on those drives, to be alert on my drive.

It's not cheap, but I probably should still take it every day like my wife does. It's just that I view it more as a tool to use when needed. I think I worry that if I take it every day it won't work as well for me. I do not know this to be true, but I have formed a habit of this style of use. Now that I am writing this I am starting to think maybe I should start to take it every day for a while just to test my theory.

Anyway, since you mentioned it I thought I would give it an endorsement since I know it has had a positive effect for me. Hope you see benefits from it also.

Best, Hank

Jump to this post

@jesfactsmon Hank, please try taking the lower dose everyday and let us know how it works. I'd like to have something that would keep me more focused. Have you ever considered taking your wife to Mayo Clinic for pain management?

REPLY
@margaret10

Hi Sunnyflower, I learned about sarm1's role in nerve death and neuropathy from a webinar put on by the Foundation for Peripheral Neuropathy. The webinar concerned neuropathy arising after chemotherapy. I've never had chemotherapy but have been on plenty of other drugs that can be toxic, so I thought I might learn something useful.

Because Eli Lilly has acquired the technology from startup company Disarm, there are now deeper pockets to identify sarm1 inhibitors. My guess is that it will take years to identify and run clinical trials with candidate inhibitors.

However, the M.D. speakers also mentioned something else that may be useful in the short Term. Sarm1 is an enzyme that, among other things, breaks down NAD+ in damaged neurons. NAD+ is a type of energy currency used by neurons to carry out normal functions. If the neuron is depleted of NAD+, it kills the neuron causing pain along the way.

The doctors mentioned that there is a new supplement available called Tru Niagen or nicotinamide riboside. In your neurons, it is converted to NAD+, thereby compensating for the loss of NAD+ caused by activated sarm1. I've just started taking it. I have no idea if it will work. It's supposed to take 4-8 weeks. I've tried many diets, supplements and treatments for my neuropathy, so what's one more?

Re neuroplasticity, I underwent neurofeedback training for 2 years for epilepsy. It absolutely worked to help me bring my seizures under control. Unfortunately, it did nothing for my pain. Neuroplasticity/neurofeedback is a very useful tool. Make sure you get it from a practitioner who is certified.

Best wishes.

Margaret

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Wow, such great info! A lot for my brain to take in LOL! Please keep me posted it sounds very interesting! Have you run this by your neurologist? I'm wondering what that response may have been.

Take Good Care, sunny

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@bustrbrwn22

Margaret please keep us posted on the Tru Niagen and thank you for sharing!

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Yes, definitely and thanks so much for sharing! Sunnyflower

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@sunnyflower

Yes, definitely and thanks so much for sharing! Sunnyflower

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I'll keep you posted on how it goes with Tru Niagen. However, it's going to take 4-8 weeks according to the manufacturer and I just started yesterday. Take care and stay safe.

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@steeldove

@jesfactsmon Hank, please try taking the lower dose everyday and let us know how it works. I'd like to have something that would keep me more focused. Have you ever considered taking your wife to Mayo Clinic for pain management?

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Hello @steeldove

It has been a while since you last posted. How are you doing?

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@margaret10

I'll keep you posted on how it goes with Tru Niagen. However, it's going to take 4-8 weeks according to the manufacturer and I just started yesterday. Take care and stay safe.

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Are you still taking TRU NIAGEN?

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You said it all❗️

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