Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Hello Trisha (@trish602) and Robert (@robertclark), I don’t have the pain you both have with your neuropathy but I do have the numbness and have had it 15+ years before I met with a neurologist and was diagnosed with idiopathic SFPN. I was told there was nothing that could be done and to just let them know if the numbness got worse. Both of my legs had numbness from just below the knees to the toes. The one thing I have learned is that you have to be your own advocate and you also must keep searching until you find something that works for you. That said, you also have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt).

After I was diagnosed in March with the SFPN, I found a closed group on Facebook that has 2800+ members with some form of neuropathy and have come up with a protocol of supplements to treat both the pain and start repairing the damaged nerves. I started taking the protocol this past September and have found that the numbness has improved. It’s now just above my ankles. I’m not sure it works for everyone but I did run the list of supplements by my primary doctor who didn’t really object. She passed it on to the pharmacist who questioned the amount of one of the supplements omega 3 but I did my own research and found a link on Mayo’s site listing different and higher amounts to treat specific conditions. So, the decision was really mine and mine alone but nothing else had worked and there was hope with this path. I do know that there are many people taking the supplements and are now pain free and able to titrate off of the drugs they were on for the pain. If you are on Facebook you can look up the group and join to see the list of supplements – “The Solutions to Peripheral Neuropathy” and read through how the group started and how it can help. It is a lot of reading but that is a good thing and will give you some idea of others and the different conditions being treated with the protocol. The group is not a “make money” scam so that made me feel better when I first looked into it. All of the items can be found with links to amazon.com or the manufacturers website for a couple of the supplements that are not sold on Amazon.

Whatever you do, don’t give up and keep being your own advocate. No one else, including your doctor is going to be or has time to be your advocate. As, always, I recommend discussing with your doctor first.

Good luck!

John

REPLY

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

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@kdubois

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

Jump to this post

Where do I find that video? I have neuropathy in my left leg and foot.

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@kdubois

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

Jump to this post

Is this the video you were referring to @kdubois?
http://mayocl.in/2gf92tS Mayo Clinic dermatologist Mark Davis, M.D., describes erythromelalgia and treatment options.

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@kdubois

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

Jump to this post

I am also looking for that video. Please share results if you get one. Thanks

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@johnbishop

Hello Trisha (@trish602) and Robert (@robertclark), I don’t have the pain you both have with your neuropathy but I do have the numbness and have had it 15+ years before I met with a neurologist and was diagnosed with idiopathic SFPN. I was told there was nothing that could be done and to just let them know if the numbness got worse. Both of my legs had numbness from just below the knees to the toes. The one thing I have learned is that you have to be your own advocate and you also must keep searching until you find something that works for you. That said, you also have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt).

After I was diagnosed in March with the SFPN, I found a closed group on Facebook that has 2800+ members with some form of neuropathy and have come up with a protocol of supplements to treat both the pain and start repairing the damaged nerves. I started taking the protocol this past September and have found that the numbness has improved. It’s now just above my ankles. I’m not sure it works for everyone but I did run the list of supplements by my primary doctor who didn’t really object. She passed it on to the pharmacist who questioned the amount of one of the supplements omega 3 but I did my own research and found a link on Mayo’s site listing different and higher amounts to treat specific conditions. So, the decision was really mine and mine alone but nothing else had worked and there was hope with this path. I do know that there are many people taking the supplements and are now pain free and able to titrate off of the drugs they were on for the pain. If you are on Facebook you can look up the group and join to see the list of supplements – “The Solutions to Peripheral Neuropathy” and read through how the group started and how it can help. It is a lot of reading but that is a good thing and will give you some idea of others and the different conditions being treated with the protocol. The group is not a “make money” scam so that made me feel better when I first looked into it. All of the items can be found with links to amazon.com or the manufacturers website for a couple of the supplements that are not sold on Amazon.

Whatever you do, don’t give up and keep being your own advocate. No one else, including your doctor is going to be or has time to be your advocate. As, always, I recommend discussing with your doctor first.

Good luck!

John

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Hello John: Thanks for your reply. You are correct in that we need to be our own advocates. I found two reasons that I have peripheral neuropathy, one being the length of time I was kept in bed during a hospitalization and the other from a medication Amiodarone that I literally had to beg my doctors to get me off that drug. Right now I take nothing for the pain and/or pins and needles sensations. I’d rather tough it out than be on opioids that keep me housebound. I will keep on searching and will definitely check out that Facebook site you mentioned. Thanks for that.
Keep on helping others.
Trish D

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@kdubois

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

Jump to this post

Hi Trish – Colleen posted the link to the video just above your post. I watched it this morning – pretty informative.

REPLY
@johnbishop

Hello Trisha (@trish602) and Robert (@robertclark), I don’t have the pain you both have with your neuropathy but I do have the numbness and have had it 15+ years before I met with a neurologist and was diagnosed with idiopathic SFPN. I was told there was nothing that could be done and to just let them know if the numbness got worse. Both of my legs had numbness from just below the knees to the toes. The one thing I have learned is that you have to be your own advocate and you also must keep searching until you find something that works for you. That said, you also have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt).

After I was diagnosed in March with the SFPN, I found a closed group on Facebook that has 2800+ members with some form of neuropathy and have come up with a protocol of supplements to treat both the pain and start repairing the damaged nerves. I started taking the protocol this past September and have found that the numbness has improved. It’s now just above my ankles. I’m not sure it works for everyone but I did run the list of supplements by my primary doctor who didn’t really object. She passed it on to the pharmacist who questioned the amount of one of the supplements omega 3 but I did my own research and found a link on Mayo’s site listing different and higher amounts to treat specific conditions. So, the decision was really mine and mine alone but nothing else had worked and there was hope with this path. I do know that there are many people taking the supplements and are now pain free and able to titrate off of the drugs they were on for the pain. If you are on Facebook you can look up the group and join to see the list of supplements – “The Solutions to Peripheral Neuropathy” and read through how the group started and how it can help. It is a lot of reading but that is a good thing and will give you some idea of others and the different conditions being treated with the protocol. The group is not a “make money” scam so that made me feel better when I first looked into it. All of the items can be found with links to amazon.com or the manufacturers website for a couple of the supplements that are not sold on Amazon.

Whatever you do, don’t give up and keep being your own advocate. No one else, including your doctor is going to be or has time to be your advocate. As, always, I recommend discussing with your doctor first.

Good luck!

John

Jump to this post

Hi Trish and John. I use a topical cream called Magnilife DB painrelieving foot cream and it relieves some of my foot burning and numbness. It can be found in most drug stores, OTC product.

REPLY
@johnbishop

Hello Trisha (@trish602) and Robert (@robertclark), I don’t have the pain you both have with your neuropathy but I do have the numbness and have had it 15+ years before I met with a neurologist and was diagnosed with idiopathic SFPN. I was told there was nothing that could be done and to just let them know if the numbness got worse. Both of my legs had numbness from just below the knees to the toes. The one thing I have learned is that you have to be your own advocate and you also must keep searching until you find something that works for you. That said, you also have to be mindful of all the scams and companies that prey on people with our conditions (http://mayocl.in/2gcdDNt).

After I was diagnosed in March with the SFPN, I found a closed group on Facebook that has 2800+ members with some form of neuropathy and have come up with a protocol of supplements to treat both the pain and start repairing the damaged nerves. I started taking the protocol this past September and have found that the numbness has improved. It’s now just above my ankles. I’m not sure it works for everyone but I did run the list of supplements by my primary doctor who didn’t really object. She passed it on to the pharmacist who questioned the amount of one of the supplements omega 3 but I did my own research and found a link on Mayo’s site listing different and higher amounts to treat specific conditions. So, the decision was really mine and mine alone but nothing else had worked and there was hope with this path. I do know that there are many people taking the supplements and are now pain free and able to titrate off of the drugs they were on for the pain. If you are on Facebook you can look up the group and join to see the list of supplements – “The Solutions to Peripheral Neuropathy” and read through how the group started and how it can help. It is a lot of reading but that is a good thing and will give you some idea of others and the different conditions being treated with the protocol. The group is not a “make money” scam so that made me feel better when I first looked into it. All of the items can be found with links to amazon.com or the manufacturers website for a couple of the supplements that are not sold on Amazon.

Whatever you do, don’t give up and keep being your own advocate. No one else, including your doctor is going to be or has time to be your advocate. As, always, I recommend discussing with your doctor first.

Good luck!

John

Jump to this post

Hi Robert, Thanks for the information. I’m always looking for something better for my feet :-). I looked it up and see that it has the following – Inactive Ingredients: Water, Canola Oil, Beeswax, Octyl Stearate, Methyl Salicylate, Tocophenol Acetate (Vitmain E), Triethanolamine, Bergamot OIl, Camphor, Menthol, Eucalyptus Oil, Steareth-21, Ceteh-20, Stearic Acid, Cetyl Alcohol, Glyceryl Stearate (and) Pag-100 Stearate, Propylene Glycol, Zanthan Gum, Propyl Paraben, Carbomer 940, Imidazolinyl Urea.

From the name I thought it might have magnesium in it. I’m currently using Life-flo Pure Magnesium Oil spray to help with hydrating my tootsies but I don’t like it as much as the lotion version of their product. I just thought the oil spray might be better but I’ve found I like the creams and lotions better. I have tried all of the usual suspects with no help – Australian Dream, Blu-Emu, etc… I might give the Magnilife DB stuff a try.

Thanks for the info!
John

REPLY

Hi John, on the MagniLife DB container the primary ingredients are: Gnaphalium 6X, Gelsemium sempervirens, and Apis mallfica. It does give me some rlief. MagniLife does have other products that don’t work for me. Hope this helps.

REPLY
@kdubois

My mother (71) and daughter (14) have it, and their diagnoses was primary erythromelalgia. Peripheral neuropathy is one of the symptoms, in addition to chronic dry mouth, Raynaud’s, and feet (and sometimes hands) that get very red and hot. I have symptoms of erythromelalgia as well, but I don’t have the peripheral neuropathy at this point. I’m hoping to bring my daughter to Mayo’s erythromelagia clinic within the next year. Just last week, I watched a video on their web page that explains how to, and how not to, relieve the symptoms of peripheral neuropathy.

Jump to this post

Hi John: Thanks for the heads-up. I found that link right after I wrote that post on wanting to see that video.
Again, thanks.
Trish

REPLY

I ran across an interesting YouTube video by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin (His BIO – http://bit.ly/2gJPSIK).

Link to video – http://bit.ly/2gJzUyC
It’s a chalkboard explanation of what polyneuropathy is in laymans terms. Easy to understand even for me! Easier than my last talk with a neurologist that asked me if he could take pictures of my feet to use in an instructional video for peripheral neuropathy – perfect example of hammer toes. ­čÖé

Hope this helps,
John

REPLY
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