Hello Mari (@mari), if you are not on Facebook you will need to create a login, then the link should work. Once you join the group, please read the new member Welcome message which explains how to get started. It is a lot of reading but it is necessary and it is worth the time. Here is the link to the closed group - https://www.facebook.com/groups/SPNPD/.
Before you start the protocol, please have the discussion with your doctor. I gave the list to my PN who ran them by the Mayo pharmacist and I received sort of a ho-hum response which is what I expected. I only have numbness in my legs and feet and there are no drugs to treat numbness per my PN and my Mayo neurologist. They can only offer drugs to treat the pain which is caused by damaged nerves. The drugs come with a lot of side effects, none good. The protocol supplements work on repairing the damaged nerves which in return eliminates the pain and reduces the numbness. I have been taking the supplements since September. When I started I had numbness (no pain) in both legs from just below the knee to the toes. Now the numbness seems to start just above the ankles. No two people are the same and others that started with PN with pain and numbness were also taking the standard PN pain drugs - gabapentin, lyrica, etc.. Those people have been able to get off of the drugs which are not needed when the pain goes away. IT IS REALLY IMPORTANT that you discuss this with your doctor. If you read through the group you will be able read success stories from group members. I would join the group and read, read, read before you make any decisions. Also, remember that you are your best advocate and the one who makes the final decision.
Most of the research done for peripheral neuropathy addresses the pain and how to block the pain, etc.. I recently read an article on the Foundation for Peripheral Neuropathy's website but can't find it again. It referenced the following NCBI link which may provide more hope for those suffering from peripheral neuropathy - https://www.ncbi.nlm.nih.gov/pubmed/22201810.
John, is there any way to access the protocol without Facebook? My symptoms are very simiar to yours - when they began in my forties I was screened for MS and Charcot-Marie Tooth because of the unexplained nerve damage in both legs and feet, both were negative-thankfully. Nothing progressed for over a decade, which was great - now I am experiencing some progression and am seeing a new neurologist in Chicago today. Thanks so much for sharing your success and encouragement here! I;ve used Essentrics and a rowing machine to keep up my strength for years, and after reading in this forum started introducing the Wahl protocol in to my diet a week or so ago.
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
John, is there any way to access the protocol without Facebook? My symptoms are very simiar to yours - when they began in my forties I was screened for MS and Charcot-Marie Tooth because of the unexplained nerve damage in both legs and feet, both were negative-thankfully. Nothing progressed for over a decade, which was great - now I am experiencing some progression and am seeing a new neurologist in Chicago today. Thanks so much for sharing your success and encouragement here! I;ve used Essentrics and a rowing machine to keep up my strength for years, and after reading in this forum started introducing the Wahl protocol in to my diet a week or so ago.
Welcome Susan @susan0514, The Facebook group for the protocol does have a website. You don't have to use Facebook but a lot of members on the protocol use Facebook for the research and sharing. Their website has gotten a lot better and they have added a lot of their background/research information along with frequently asked questions (FAQs) - https://theprotocolworks.com/. They do have a Why the Protocol answer in the FAQs but the research listed doesn't have the hyperlinks to the articles. I added those and shared the document in another post here if you want to read the research - https://connect.mayoclinic.org/comment/957496/.
It might be helpful to print out the Why the Protocol document in the above link and share it with your neurologist/doctor. Can you share an update after you see your new neurologist?
Welcome Susan @susan0514, The Facebook group for the protocol does have a website. You don't have to use Facebook but a lot of members on the protocol use Facebook for the research and sharing. Their website has gotten a lot better and they have added a lot of their background/research information along with frequently asked questions (FAQs) - https://theprotocolworks.com/. They do have a Why the Protocol answer in the FAQs but the research listed doesn't have the hyperlinks to the articles. I added those and shared the document in another post here if you want to read the research - https://connect.mayoclinic.org/comment/957496/.
It might be helpful to print out the Why the Protocol document in the above link and share it with your neurologist/doctor. Can you share an update after you see your new neurologist?
John, thank you so much for these links. I liked my new neurologist and was impressed by her thoroughness. I'm going to have another EMG - it's been many years since the last one - with her in early April. My reflexes have deteriorated since my last neurological exam, but other aspects of the assessment were encouraging. I'm definitely glad I've made a point to stay physically active -
John, is there any way to access the protocol without Facebook? My symptoms are very simiar to yours - when they began in my forties I was screened for MS and Charcot-Marie Tooth because of the unexplained nerve damage in both legs and feet, both were negative-thankfully. Nothing progressed for over a decade, which was great - now I am experiencing some progression and am seeing a new neurologist in Chicago today. Thanks so much for sharing your success and encouragement here! I;ve used Essentrics and a rowing machine to keep up my strength for years, and after reading in this forum started introducing the Wahl protocol in to my diet a week or so ago.
Welcome Susan @susan0514, The Facebook group for the protocol does have a website. You don't have to use Facebook but a lot of members on the protocol use Facebook for the research and sharing. Their website has gotten a lot better and they have added a lot of their background/research information along with frequently asked questions (FAQs) - https://theprotocolworks.com/. They do have a Why the Protocol answer in the FAQs but the research listed doesn't have the hyperlinks to the articles. I added those and shared the document in another post here if you want to read the research - https://connect.mayoclinic.org/comment/957496/.
It might be helpful to print out the Why the Protocol document in the above link and share it with your neurologist/doctor. Can you share an update after you see your new neurologist?
Thank you for the link to the website. The testimonials are very encouraging! I wish the cost of The Protocol wasn't so high. I will definitely print out the document and discuss it with my new neurologist when I see her next month for the EMG.
I have severe axonal sensorimotor peripheral polyneuropathy along with small fiber neuropathy.
Small fiber neuropathy (affects the organs stomach, heart, bladder and so forth including brain).
I don’t abuse my (2) 10 mg Oxycodone BID, that I take simultaneously with Theraplant 360X cannabis concentrate capsule, but I’m still reading “chronic,” next to my portal medication column.
Why isn’t my Synthroid labeled as “chronic?” I have to take that forever…what about BP meds or any other med that’s forever?
Smear campaign that narcissists use against us.
I’m taking the least amount of pain medication ever now that CT., has legal medical cannabis program.
The pharmacists are owners of CT dispensaries, so they will sit with you to hear what you have, and recommend products and various routes. Without it, I might have headed to Vermont to drink the “death with dignity,” potion.
I’m sorry your pain doc got “tapped”, for helping people in agony. You must be so frustrated and in pain.
Try and talk to a dispensary pharmacist to guide you.
Good luck -
I had a severe neck injury and had to have surgery. They had to use cadaver bone to make me several new discs and I ended up with a plate and 4 large screws in my neck, but the surgery failed and I have had horrible pain for 14 year's. I also have malabsorption problems and am on a feeding tube into my small intestine. I was on a 75mcg fentanyl patch and 4 10mg oxycodone tablets, muscle relaxers and fiorecet for disabling headaches caused by my neck. I never felt different just my pain was so much better and I could work and do things. Then the laws changed and my pain management doctor retired and my life was turned to hell. The new doctor treated me like a drug addict and cut all my medication down to 1/2 and then the next month cut it more and told me she wasn't prescribing me anymore and I was banned from there clinics. I tried medical Marijuana and it made me feel off and I hate that feeling and got so paranoid. They didn't help me find what kind to try so I didn't renew my license. The withdrawals from her stopping my medication and the unimaginable return of pain made me want to just die. I now have a new pain management doctor and they have me on 37mcg of patches and it only barely helps. I am at a loss on how to get through everyday and my quality of life is awful. Good luck to you. I don't understand why we have to pay the price for drug addicts that get illegal drugs and overdose. They are looking for a high, we are looking for relief from horrible disabling pain.
Connect
Connect
Like
Helpful
Hug
John, is there any way to access the protocol without Facebook? My symptoms are very simiar to yours - when they began in my forties I was screened for MS and Charcot-Marie Tooth because of the unexplained nerve damage in both legs and feet, both were negative-thankfully. Nothing progressed for over a decade, which was great - now I am experiencing some progression and am seeing a new neurologist in Chicago today. Thanks so much for sharing your success and encouragement here! I;ve used Essentrics and a rowing machine to keep up my strength for years, and after reading in this forum started introducing the Wahl protocol in to my diet a week or so ago.
-
Like -
Helpful -
Hug
1 ReactionSuffering with neuropathy in my feet and toes for a couple of years
Welcome Susan @susan0514, The Facebook group for the protocol does have a website. You don't have to use Facebook but a lot of members on the protocol use Facebook for the research and sharing. Their website has gotten a lot better and they have added a lot of their background/research information along with frequently asked questions (FAQs) - https://theprotocolworks.com/. They do have a Why the Protocol answer in the FAQs but the research listed doesn't have the hyperlinks to the articles. I added those and shared the document in another post here if you want to read the research - https://connect.mayoclinic.org/comment/957496/.
It might be helpful to print out the Why the Protocol document in the above link and share it with your neurologist/doctor. Can you share an update after you see your new neurologist?
-
Like -
Helpful -
Hug
1 ReactionJohn, thank you so much for these links. I liked my new neurologist and was impressed by her thoroughness. I'm going to have another EMG - it's been many years since the last one - with her in early April. My reflexes have deteriorated since my last neurological exam, but other aspects of the assessment were encouraging. I'm definitely glad I've made a point to stay physically active -
-
Like -
Helpful -
Hug
2 ReactionsJohn, do you have a link to the Face Book group? Or give me the name? Thanks John
-
Like -
Helpful -
Hug
1 Reaction@kfrenc04 - The name of the group is Solutions to Peripheral Neuropathy Pain & Discomfort. Here’s the FB link to the group.
https://m.facebook.com/groups/952340464830989/Thank you
-
Like -
Helpful -
Hug
1 ReactionThank you for the link to the website. The testimonials are very encouraging! I wish the cost of The Protocol wasn't so high. I will definitely print out the document and discuss it with my new neurologist when I see her next month for the EMG.
-
Like -
Helpful -
Hug
1 ReactionI have severe axonal sensorimotor peripheral polyneuropathy along with small fiber neuropathy.
Small fiber neuropathy (affects the organs stomach, heart, bladder and so forth including brain).
I had a severe neck injury and had to have surgery. They had to use cadaver bone to make me several new discs and I ended up with a plate and 4 large screws in my neck, but the surgery failed and I have had horrible pain for 14 year's. I also have malabsorption problems and am on a feeding tube into my small intestine. I was on a 75mcg fentanyl patch and 4 10mg oxycodone tablets, muscle relaxers and fiorecet for disabling headaches caused by my neck. I never felt different just my pain was so much better and I could work and do things. Then the laws changed and my pain management doctor retired and my life was turned to hell. The new doctor treated me like a drug addict and cut all my medication down to 1/2 and then the next month cut it more and told me she wasn't prescribing me anymore and I was banned from there clinics. I tried medical Marijuana and it made me feel off and I hate that feeling and got so paranoid. They didn't help me find what kind to try so I didn't renew my license. The withdrawals from her stopping my medication and the unimaginable return of pain made me want to just die. I now have a new pain management doctor and they have me on 37mcg of patches and it only barely helps. I am at a loss on how to get through everyday and my quality of life is awful. Good luck to you. I don't understand why we have to pay the price for drug addicts that get illegal drugs and overdose. They are looking for a high, we are looking for relief from horrible disabling pain.
-
Like -
Helpful -
Hug
2 Reactions