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?

@summertime4

@johnbishop Hi everyone. I see the subject is the Protocol. I had seen your post several months ago about the Protocol. At first I thought it was exercises or other therapy or vitamins. Yes, I found it is actually vitamins of sort and as reading more found it was also a "Product" and had it's own website and all. I was taken back by the price of these products and how long you would have to use them before you saw some relief or what. I cannot afford their product even for short time. I cannot spend much money for over the counter products either. I do take vitamins and am prescribed Vitamin B12 shots. Even with this I am told my neuropathy has progressed and this is the reason for constant, awful numbness of legs and feet. I used to have the tingling and feelings of little bugs crawling on my legs. I was told I have progressed past that the numbness and will stay with me. I go off the chart with anxiety. I constantly feel like my legs and feet are encased in cement or I have to take heavy socks off that I do not have on. I am frightened as I was just told that information yesterday by my physical therapist. I will say that the water therapy feels good and I am fortunate that I can have this even with the shut downs. Can I get more information from the group in regards to progression and where I might be going from here. Thank you. If I were able to I would certainly look into trying the "Protocol" I also get desperate for relief.

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@summertime4 Have you asked your neurologist for supplement/vitamin recommendations? Outside of B vitamins, Stabilized R Alpha Lipoic Acid and Acetyl L Carnatine are thought to be most helpful to neuropathy. Even if you can just afford those, it may help you. There are others and each person may have specific needs based upon their health issues and diagnosis. Just like certain protocol supplements may not be suited for everyone and should always be presented to your Dr before beginning.

Progression is a touchy, unknown area, unfortunately, and noone can exactly pinpoint what's next for you personally. I was petrified last spring when my first signs of leg decline began. It continued with various side effects, sensations and weaknesses that alarmed me into thinking a permanent wheelchair was in my future. Well, it was and still is, for distant walking. Ex: grocery stores, department stores, hospitals, airports. I can however have days when I can walk around my back yard (under 1/4 acre) slow and steady, then days when I cant. Gone are the days of running, jumping, skipping or even a normal paced walk. My legs debilitate me some days… I struggle with a slow stride room to room and am down with heat for the day but, I'm not in a wheelchair permanently and that is huge. It's heavy stuff and confusing to me many of days. I have polyneuropathy so legs are just one example.

As for the hopeful stuff…I have sensations that are much better managed now between lyrica, supplements, eating better. I've documented every symptom from day one and I. able to look back and see what things have worsened, improved, gone away or return. When there is so much happening inside your body (like a hostile take over), it's mentally helpful to find anything, any small thing that is hopeful.

I hope that you keep working your body as best you can and dont give up on it or yourself ever. Keep researching, learning and asking. A relentless disease deserves a relentless response.

My best to you.
Rachel

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@rwinney

@summertime4 Have you asked your neurologist for supplement/vitamin recommendations? Outside of B vitamins, Stabilized R Alpha Lipoic Acid and Acetyl L Carnatine are thought to be most helpful to neuropathy. Even if you can just afford those, it may help you. There are others and each person may have specific needs based upon their health issues and diagnosis. Just like certain protocol supplements may not be suited for everyone and should always be presented to your Dr before beginning.

Progression is a touchy, unknown area, unfortunately, and noone can exactly pinpoint what's next for you personally. I was petrified last spring when my first signs of leg decline began. It continued with various side effects, sensations and weaknesses that alarmed me into thinking a permanent wheelchair was in my future. Well, it was and still is, for distant walking. Ex: grocery stores, department stores, hospitals, airports. I can however have days when I can walk around my back yard (under 1/4 acre) slow and steady, then days when I cant. Gone are the days of running, jumping, skipping or even a normal paced walk. My legs debilitate me some days… I struggle with a slow stride room to room and am down with heat for the day but, I'm not in a wheelchair permanently and that is huge. It's heavy stuff and confusing to me many of days. I have polyneuropathy so legs are just one example.

As for the hopeful stuff…I have sensations that are much better managed now between lyrica, supplements, eating better. I've documented every symptom from day one and I. able to look back and see what things have worsened, improved, gone away or return. When there is so much happening inside your body (like a hostile take over), it's mentally helpful to find anything, any small thing that is hopeful.

I hope that you keep working your body as best you can and dont give up on it or yourself ever. Keep researching, learning and asking. A relentless disease deserves a relentless response.

My best to you.
Rachel

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Rachel, I have polyneuropathy, too. Without the pain. Do you have pain or just weakness/numbness. Mine is hereditary. Is yours?
Steph

Liked by rwinney

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@albiet, @rwinney, @jeffrapp, @mikeoc, @cwallen9, @dazzah1234, and @cloudnine — I just created a new discussion for the Protocol 525 product for the treatment of the pain & discomfort for neuropathy. I thought you might want to follow it. I'm hoping any other members who have tried the 525 or the original protocol will share their experience in the new discussion here:

Have you tried the new Protocol 525 product for neuropathy relief?
https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

Liked by rwinney

REPLY
@stefspad

Rachel, I have polyneuropathy, too. Without the pain. Do you have pain or just weakness/numbness. Mine is hereditary. Is yours?
Steph

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Hello Steph @stefspad. I was B12 deficient and I have pain, weakness, burning and intervals of numbness.

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@johnbishop

@albiet, @rwinney, @jeffrapp, @mikeoc, @cwallen9, @dazzah1234, and @cloudnine — I just created a new discussion for the Protocol 525 product for the treatment of the pain & discomfort for neuropathy. I thought you might want to follow it. I'm hoping any other members who have tried the 525 or the original protocol will share their experience in the new discussion here:

Have you tried the new Protocol 525 product for neuropathy relief?
https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

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Sounds good John. Thanks.

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Thanks John. I'm still considering the Protocol.

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@rwinney

Hello Steph @stefspad. I was B12 deficient and I have pain, weakness, burning and intervals of numbness.

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Sorry to hear about the pain and burning. The more I read the more I consider myself lucky, even though I am now using a walker a lot of the time.

REPLY
@rwinney

@summertime4 Have you asked your neurologist for supplement/vitamin recommendations? Outside of B vitamins, Stabilized R Alpha Lipoic Acid and Acetyl L Carnatine are thought to be most helpful to neuropathy. Even if you can just afford those, it may help you. There are others and each person may have specific needs based upon their health issues and diagnosis. Just like certain protocol supplements may not be suited for everyone and should always be presented to your Dr before beginning.

Progression is a touchy, unknown area, unfortunately, and noone can exactly pinpoint what's next for you personally. I was petrified last spring when my first signs of leg decline began. It continued with various side effects, sensations and weaknesses that alarmed me into thinking a permanent wheelchair was in my future. Well, it was and still is, for distant walking. Ex: grocery stores, department stores, hospitals, airports. I can however have days when I can walk around my back yard (under 1/4 acre) slow and steady, then days when I cant. Gone are the days of running, jumping, skipping or even a normal paced walk. My legs debilitate me some days… I struggle with a slow stride room to room and am down with heat for the day but, I'm not in a wheelchair permanently and that is huge. It's heavy stuff and confusing to me many of days. I have polyneuropathy so legs are just one example.

As for the hopeful stuff…I have sensations that are much better managed now between lyrica, supplements, eating better. I've documented every symptom from day one and I. able to look back and see what things have worsened, improved, gone away or return. When there is so much happening inside your body (like a hostile take over), it's mentally helpful to find anything, any small thing that is hopeful.

I hope that you keep working your body as best you can and dont give up on it or yourself ever. Keep researching, learning and asking. A relentless disease deserves a relentless response.

My best to you.
Rachel

Jump to this post

@rwinney Thank you I am listening to everyone and so thankful you are all here. I need to do more for myself. I do need more vitamins. I take Vit D daily. I tested low on that. I am also prescribed B12 injections. Since the shutdown I have not had one. A friend was giving me the shot and with not being able to have visitors and me not being instructed as how to do it, I have not been getting one. I have to do better.

REPLY
@johnbishop

@albiet, @rwinney, @jeffrapp, @mikeoc, @cwallen9, @dazzah1234, and @cloudnine — I just created a new discussion for the Protocol 525 product for the treatment of the pain & discomfort for neuropathy. I thought you might want to follow it. I'm hoping any other members who have tried the 525 or the original protocol will share their experience in the new discussion here:

Have you tried the new Protocol 525 product for neuropathy relief?
https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

Jump to this post

Thanks, John.
See you there
Jeff

REPLY
@summertime4

@rwinney Thank you I am listening to everyone and so thankful you are all here. I need to do more for myself. I do need more vitamins. I take Vit D daily. I tested low on that. I am also prescribed B12 injections. Since the shutdown I have not had one. A friend was giving me the shot and with not being able to have visitors and me not being instructed as how to do it, I have not been getting one. I have to do better.

Jump to this post

@summertime4 Oh yes, please grab B12 supplements (pill form) from any pharmacy and at least get that in. You can ask your Neurologist or PCP to advise on dosing equivalent to your injection. I received bi-weekly b12 injections for 4 months before regulating then my neuro agreed to pill form.

PS: CVS will now deliver too.

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@stefspad

Sorry to hear about the pain and burning. The more I read the more I consider myself lucky, even though I am now using a walker a lot of the time.

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I'm sorry about the walker but I hope it helps you.

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@summertime4

@rwinney Thank you I am listening to everyone and so thankful you are all here. I need to do more for myself. I do need more vitamins. I take Vit D daily. I tested low on that. I am also prescribed B12 injections. Since the shutdown I have not had one. A friend was giving me the shot and with not being able to have visitors and me not being instructed as how to do it, I have not been getting one. I have to do better.

Jump to this post

Hi @summertime4 Are the B12 injectables not offered at the pharmacy? What is stopping you from self injecting? Maybe there is a chance you can do it on your own. The injection is given subcutaneously meaning injected in the fat tissue. There are visible sites for you. If possible self inject otherwise call the doctor who prescribed it and let him or her decide on alternates you may have.

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@avmcbellar Thank you and @rwinney Good advise. I will check with the pharmacist and doctor. I don't know why I did not ask for a quick lesson so I can do this myself. Let me ask anyone who is low on B12 and injecting. My primary care doctor did not suggest B12 injections and my blood work showed normal levels. The neurologist prescribed the B12 without doing another blood test. He said that although the number is normal I may not be metabolizing or getting into my system because I had surgery on my stomach 9 years ago. I had a nisson funtalmentation? because my esophagus was being harmed by stomach acid. I do know this to be true, but didn't ask if that were going on wouldn't my B12 be under normal amount.

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@summertime4, glad to help with any insight. I don’t know what blood test was done. Since you had digestive surgery, if the intrinsic factor is no longer there to absorb the B12 perhaps you have pernicious anemia. Usually those people are prescribed B12 injections and should get an energy boost. If the intrinsic factor is not present to absorb the B12 then pill form will not work. That is why it is given in an injectable form to bypass the digestive system.

Liked by rwinney

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@avmcbellar Thank you. No one has ever told me about this. Obviously this is what the neurologist is thinking and makes sense to me. This may be the culprit in my neoropathy. I will be looking into this. Wow.

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