Hi @kmst1994, Welcome to Connect. You will notice that we merged your discussion with another discussion on the same topic. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to the Small Fiber Neuropathy where you can meet @kfrenc04, @acv, @julkun, @cehunt57 and other members discussing small fiber neuropathy.
The vitamin protocols that you can purchase are very, very expensive. Does anyone have a list of what to take and dosage so I can purchase on my own? Thank you in advance.
@johnbishop I have an appointment with my PC in a couple of weeks and I will see what he says. I do think I will be making an appointment at Mayo to get another opinion. Question: do my symptoms fit with small fiber neuropathy?
I am getting a second opinion at Mayo, Rochester June 3. Just so you know. Which is not a surprise. It has taken me several months to get the appointment even with my doctor from Mayo that did my Stem Cell Transplant referring me. I am not expecting a solution, but I need for my own peace of mind a second opinion. Mayo saved my life 8 years ago so I trust them.
The vitamin protocols that you can purchase are very, very expensive. Does anyone have a list of what to take and dosage so I can purchase on my own? Thank you in advance.
@kfrenc04 here is the list of the ingredients for the supplements I take listed under the FAQs on the website. The daily amounts are listed but half of listed dosages are in the morning and evening and Biotin (B7) is taken midday. You can purchase most from Amazon. We used to purchase them through Amazon and the price is really not much difference than purchasing through the group. The groups goal is to have a liquid protocol mid 2022 which will make it easier to take.
"Protocol formula daily: B1 50mg, B2 50mg, B3 20mg, B7 20,000mcg, Flaxseed Oil 2000mg, na R ALA 1200mg, D3 4000 IU, Chelated Magnesium 200 mg, Methylcobalamin sublingual B12 5000mcg, K2 200mcg, Acetal L Carnitine 1000mg, 3Tbs Organic Hemp Seed Oil
---------
The midday capsules contain Biotin (vitamin B7). The morning and evening capsules that contain stabilized R-ALA will absorb Biotin if they are taken at the same time. It is for this reason that we separate them by two to three hours."
-- https://theprotocol525.com/faq/
Good luck, hope it works for you and you can provide an update.
@johnbishop I have an appointment with my PC in a couple of weeks and I will see what he says. I do think I will be making an appointment at Mayo to get another opinion. Question: do my symptoms fit with small fiber neuropathy?
@kmst1994 - Your symptoms are certainly similar to those other members have shared for their small fiber neuropathy. The Foundation for Peripheral Neuropathy has a fairly comprehensive list of the symptoms here - https://www.foundationforpn.org/symptoms/
The vitamin protocols that you can purchase are very, very expensive. Does anyone have a list of what to take and dosage so I can purchase on my own? Thank you in advance.
When you purchase from a vitamin store you are not getting pharmaceutical grade supplements so you will not get the same results, if any. By the time you buy all of the different ingredients you may even be spending more than the combined formula. I have been taking EB-N6 for just over 6 weeks and am VERY pleased with my improvement. This company will break your payment into 3 monthly amounts. It does take a doctor's order as this is a medical "food".
@kfrenc04 here is the list of the ingredients for the supplements I take listed under the FAQs on the website. The daily amounts are listed but half of listed dosages are in the morning and evening and Biotin (B7) is taken midday. You can purchase most from Amazon. We used to purchase them through Amazon and the price is really not much difference than purchasing through the group. The groups goal is to have a liquid protocol mid 2022 which will make it easier to take.
"Protocol formula daily: B1 50mg, B2 50mg, B3 20mg, B7 20,000mcg, Flaxseed Oil 2000mg, na R ALA 1200mg, D3 4000 IU, Chelated Magnesium 200 mg, Methylcobalamin sublingual B12 5000mcg, K2 200mcg, Acetal L Carnitine 1000mg, 3Tbs Organic Hemp Seed Oil
---------
The midday capsules contain Biotin (vitamin B7). The morning and evening capsules that contain stabilized R-ALA will absorb Biotin if they are taken at the same time. It is for this reason that we separate them by two to three hours."
-- https://theprotocol525.com/faq/
Good luck, hope it works for you and you can provide an update.
I am new to this forum. I have been recently diagnosed with small fiber neuropathy. I experience tingling in my hands and feet that started at the same time. I have had many blood tests and a nerve conduction test, and brain, neck and back MRI’s. They didn’t find anything. My neurologist doesn’t seem to think a nerve biopsy is necessary, since he is pretty sure that’s what I have. Has anybody been diagnosed with small fiber neuropathy who doesn’t have pain or burning, just the tingling and pins and needles? I don’t know if this is just the beginning, and the pain is yet to come? I am told 50% of the people diagnosed with this have no cause as to how this happened. I have also heard that there might be some connection to this and the COVID vaccine. Any thoughts on these issues would be much appreciated. Thanks, Joy
I am new to this forum. I have been recently diagnosed with small fiber neuropathy. I experience tingling in my hands and feet that started at the same time. I have had many blood tests and a nerve conduction test, and brain, neck and back MRI’s. They didn’t find anything. My neurologist doesn’t seem to think a nerve biopsy is necessary, since he is pretty sure that’s what I have. Has anybody been diagnosed with small fiber neuropathy who doesn’t have pain or burning, just the tingling and pins and needles? I don’t know if this is just the beginning, and the pain is yet to come? I am told 50% of the people diagnosed with this have no cause as to how this happened. I have also heard that there might be some connection to this and the COVID vaccine. Any thoughts on these issues would be much appreciated. Thanks, Joy
Hello @joypalmer1 and welcome to Mayo Clinic Connect. It is great to have you here and reaching out to connect with others as you learn of this diagnosis.
You will notice that I moved your post into an existing discussion on neuropathy to allow you to better connect with other members. Members who have recently been part of this discussion and who may be able to share more about their specific experience with their evolution of symptoms and current state include @kfrenc04@retired123@jkcampbell and @kmst1994. kmst1994.
In the meantime, I thought you might like some of the information that can be found in the link below regarding symptoms and causes.
I am new to this forum. I have been recently diagnosed with small fiber neuropathy. I experience tingling in my hands and feet that started at the same time. I have had many blood tests and a nerve conduction test, and brain, neck and back MRI’s. They didn’t find anything. My neurologist doesn’t seem to think a nerve biopsy is necessary, since he is pretty sure that’s what I have. Has anybody been diagnosed with small fiber neuropathy who doesn’t have pain or burning, just the tingling and pins and needles? I don’t know if this is just the beginning, and the pain is yet to come? I am told 50% of the people diagnosed with this have no cause as to how this happened. I have also heard that there might be some connection to this and the COVID vaccine. Any thoughts on these issues would be much appreciated. Thanks, Joy
Good afternoon @joypalmer1, I notice that Amanda has reached out to some other SFN (Small Fiber Neuropathy) members. I didn't see my name......so I am kind of butting in here. However, there is one easy way to validate the SFN diagnosis and that is a simple skin punch biopsy. It just takes seconds and then is sent to a special lab where the number of nerve cells can be counted, My result was .09% which is considered severe. I also have the standard burning and pain as well as the other symptoms of tingle tangles. (that's what I call them).
The cause of my SFN is trauma to include quite a few falls, accidents, and surgeries. You will also hear from @johnbishop who has SFN but only numbness and tingling. Each of us has physical challenges in different ways.
And now for your other question......and that is about COVID. I have had all of the vaccines and boosters without any SFN reaction. However, right now I do have COVID....the newest variant. Why and how I got it I don't know. I do know that COVID on top of SFN is quite a tough challenge. Today is day 13 and I am beginning to feel a bit better and may be on the road to recovery.
Would you mind sharing what treatments and medications you are using or have tried. That would be helpful.
May you be free of suffering and the causes of suffering.
Chris
I am new to this forum. I have been recently diagnosed with small fiber neuropathy. I experience tingling in my hands and feet that started at the same time. I have had many blood tests and a nerve conduction test, and brain, neck and back MRI’s. They didn’t find anything. My neurologist doesn’t seem to think a nerve biopsy is necessary, since he is pretty sure that’s what I have. Has anybody been diagnosed with small fiber neuropathy who doesn’t have pain or burning, just the tingling and pins and needles? I don’t know if this is just the beginning, and the pain is yet to come? I am told 50% of the people diagnosed with this have no cause as to how this happened. I have also heard that there might be some connection to this and the COVID vaccine. Any thoughts on these issues would be much appreciated. Thanks, Joy
Hi Joy @joypalmer1, I would like to add my welcome to Connect along with @amandajro, @artscaping and others. I went for 20+ years before getting a diagnosis of idiopathic small fiber PN. Mine started in my feet with numbness and a little tingling but never any pain. I posted my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/
I did have the nerve conduction test along with a few other tests and a physical exam by a Mayo neurologist when I was diagnosed but I didn't have a skin punch biopsy which is the gold standard for diagnosing neuropathy. I know you probably feel the same way I did when I decided to get a diagnosis. I was a little worried and uncertain how quickly it would progress. Unfortunately I don't believe there is an answer out there and the best thing we can do is learn everything we can about our condition and make good lifestyle choices along with treatments that we find helpful. Here are a couple of sites that I've used to learn more about neuropathy that you might find helpful:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
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The vitamin protocols that you can purchase are very, very expensive. Does anyone have a list of what to take and dosage so I can purchase on my own? Thank you in advance.
-
Like -
Helpful -
Hug
1 ReactionI am getting a second opinion at Mayo, Rochester June 3. Just so you know. Which is not a surprise. It has taken me several months to get the appointment even with my doctor from Mayo that did my Stem Cell Transplant referring me. I am not expecting a solution, but I need for my own peace of mind a second opinion. Mayo saved my life 8 years ago so I trust them.
-
Like -
Helpful -
Hug
2 Reactions@kfrenc04 here is the list of the ingredients for the supplements I take listed under the FAQs on the website. The daily amounts are listed but half of listed dosages are in the morning and evening and Biotin (B7) is taken midday. You can purchase most from Amazon. We used to purchase them through Amazon and the price is really not much difference than purchasing through the group. The groups goal is to have a liquid protocol mid 2022 which will make it easier to take.
"Protocol formula daily: B1 50mg, B2 50mg, B3 20mg, B7 20,000mcg, Flaxseed Oil 2000mg, na R ALA 1200mg, D3 4000 IU, Chelated Magnesium 200 mg, Methylcobalamin sublingual B12 5000mcg, K2 200mcg, Acetal L Carnitine 1000mg, 3Tbs Organic Hemp Seed Oil
---------
The midday capsules contain Biotin (vitamin B7). The morning and evening capsules that contain stabilized R-ALA will absorb Biotin if they are taken at the same time. It is for this reason that we separate them by two to three hours."
-- https://theprotocol525.com/faq/
Good luck, hope it works for you and you can provide an update.
@kmst1994 - Your symptoms are certainly similar to those other members have shared for their small fiber neuropathy. The Foundation for Peripheral Neuropathy has a fairly comprehensive list of the symptoms here - https://www.foundationforpn.org/symptoms/
When you purchase from a vitamin store you are not getting pharmaceutical grade supplements so you will not get the same results, if any. By the time you buy all of the different ingredients you may even be spending more than the combined formula. I have been taking EB-N6 for just over 6 weeks and am VERY pleased with my improvement. This company will break your payment into 3 monthly amounts. It does take a doctor's order as this is a medical "food".
Thank you kindly.
-
Like -
Helpful -
Hug
1 ReactionI am new to this forum. I have been recently diagnosed with small fiber neuropathy. I experience tingling in my hands and feet that started at the same time. I have had many blood tests and a nerve conduction test, and brain, neck and back MRI’s. They didn’t find anything. My neurologist doesn’t seem to think a nerve biopsy is necessary, since he is pretty sure that’s what I have. Has anybody been diagnosed with small fiber neuropathy who doesn’t have pain or burning, just the tingling and pins and needles? I don’t know if this is just the beginning, and the pain is yet to come? I am told 50% of the people diagnosed with this have no cause as to how this happened. I have also heard that there might be some connection to this and the COVID vaccine. Any thoughts on these issues would be much appreciated. Thanks, Joy
Hello @joypalmer1 and welcome to Mayo Clinic Connect. It is great to have you here and reaching out to connect with others as you learn of this diagnosis.
You will notice that I moved your post into an existing discussion on neuropathy to allow you to better connect with other members. Members who have recently been part of this discussion and who may be able to share more about their specific experience with their evolution of symptoms and current state include @kfrenc04 @retired123 @jkcampbell and @kmst1994. kmst1994.
In the meantime, I thought you might like some of the information that can be found in the link below regarding symptoms and causes.
- Peripheral Neuropathy: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061
How long have you noticed the tingling and pins and needles sensations?
-
Like -
Helpful -
Hug
2 ReactionsGood afternoon @joypalmer1, I notice that Amanda has reached out to some other SFN (Small Fiber Neuropathy) members. I didn't see my name......so I am kind of butting in here. However, there is one easy way to validate the SFN diagnosis and that is a simple skin punch biopsy. It just takes seconds and then is sent to a special lab where the number of nerve cells can be counted, My result was .09% which is considered severe. I also have the standard burning and pain as well as the other symptoms of tingle tangles. (that's what I call them).
The cause of my SFN is trauma to include quite a few falls, accidents, and surgeries. You will also hear from @johnbishop who has SFN but only numbness and tingling. Each of us has physical challenges in different ways.
And now for your other question......and that is about COVID. I have had all of the vaccines and boosters without any SFN reaction. However, right now I do have COVID....the newest variant. Why and how I got it I don't know. I do know that COVID on top of SFN is quite a tough challenge. Today is day 13 and I am beginning to feel a bit better and may be on the road to recovery.
Would you mind sharing what treatments and medications you are using or have tried. That would be helpful.
May you be free of suffering and the causes of suffering.
Chris
-
Like -
Helpful -
Hug
4 ReactionsHi Joy @joypalmer1, I would like to add my welcome to Connect along with @amandajro, @artscaping and others. I went for 20+ years before getting a diagnosis of idiopathic small fiber PN. Mine started in my feet with numbness and a little tingling but never any pain. I posted my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/
I did have the nerve conduction test along with a few other tests and a physical exam by a Mayo neurologist when I was diagnosed but I didn't have a skin punch biopsy which is the gold standard for diagnosing neuropathy. I know you probably feel the same way I did when I decided to get a diagnosis. I was a little worried and uncertain how quickly it would progress. Unfortunately I don't believe there is an answer out there and the best thing we can do is learn everything we can about our condition and make good lifestyle choices along with treatments that we find helpful. Here are a couple of sites that I've used to learn more about neuropathy that you might find helpful:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-
Like -
Helpful -
Hug
6 Reactions