Small Fiber Neuropathy turning in to Large Fiber Neuropathy

Posted by Rachel, Volunteer Mentor @rwinney, Feb 20, 2020

Hello everyone –

As I know one can develop large fiber neuropathy after small fiber, I'm wondering if any of you have experienced it? EMG/Nerve Conduction study reads negative then changes over time to positive?

Thank you,
Rachel

@lioness

@sunnyflower I had same problem with memory concentration and found taking ginko biloba helped me but ask your Dr it does interfer with some meds

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Thank you so much! This is great info. Warmest regards, Sunny flower. 😊

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@rwinney

@sunnyflower Hi there. I was wondering if you noticed my reply to you in private message a few days back? Just didnt want you to think I never responded. 😊

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Rachel, please forgive me. I received what I think is to be more than 30 emails a day and I have saved some of them because I want to devote great care in my responses. I believe I have your saved and wonder if you wouldn't mind telling me the subject of it so that I can find it easier because I am really having trouble getting around on this blog. There are three people I need to give some thought to my responses so for now, I've just been active a little bit here and there.

I'm dealing with some really really heavy stuff right now.

Thank you so much for hanging with me and your patience and reminding me! You have been a huge blessing to me! Warmest regards, Sunny flower. 😊💗

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@rwinney

@sunnyflower Hi there. I was wondering if you noticed my reply to you in private message a few days back? Just didnt want you to think I never responded. 😊

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I just finished searching my trash. I can't find the private message you sent to me about Jesus. I 've searched everywhere! Can you help me find it? Thx Rachel, and I apologize. Sunny. 😥

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@johnbishop

Hi @jeffrapp, #theprotocolworks, Inc is a not for profit Florida corporation, registered with the IRS as a charitable organization, 501c3. The webpage where members of the Facebook Group (Solutions to Peripheral Neuropathy Pain & Discomfort – https://www.facebook.com/groups/SPNPD/) orders the new Protocol 525 is https://solutions2pnpd.com/. I order the 30 day supply which contains 3 bottles of the Organic Hemp Seed Oil and all of the supplements from the original protocol synthesized into fewer capsules which was a plus for me not having to take so many pills.

My neuropathy hasn't gotten any worse and occasionally my feet seem to have some of the feeling back and they are not quite as numb. I've been taking it since 2016. I know a lot of people hate Facebook, me included although I do use it but it's getting less each day. They were talking about a new website for support but I'm not sure where that's at. Feel free to send any questions my way and I can search the Facebook group and their files.

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@johnbishop WOW! John this is really GOOD NEWS!!! I am so happy to find out you are beginning to get some feeling back in your feet. Oh man, that is so unusual. It sure speaks well for The Protocol ( @jeffrapp you cracked me up with your comment about the name, it does sounds somewhat pretentious). Anyway John, a heartfelt pat on the back for you, you deserve this, and I hope you continue to have more feelings in your feet. I know how aggravating it has been for you my friend. Hank

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@sunnyflower

I just finished searching my trash. I can't find the private message you sent to me about Jesus. I 've searched everywhere! Can you help me find it? Thx Rachel, and I apologize. Sunny. 😥

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@sunnyflower Hi Sunny, as a disclaimer, I am mostly a novice here like you so take everything I say from this point on with a giant grain of salt..

OK, two dumb questions:

1. When you refer to "emails". do you mean Private Messages on Connect?

2.Are you looking in your Connect private message area when you search your trash? So far I can't find a way to search my trash. (Could be brain deadness on my part).

I am so sorry about your side effects from gabapentin. Drugs are such a 2 sided sword. So much downside compared to the upside. I gotta say, the word "trooper" does not even touch what YOU are.

Too bad for you though, now you have do deal SO MANY FRIENDS. 😲

Hank

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@sunnyflower

I just finished searching my trash. I can't find the private message you sent to me about Jesus. I 've searched everywhere! Can you help me find it? Thx Rachel, and I apologize. Sunny. 😥

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@sunnyflower Listen, you dont need to reply to my private message at all my dear. It was simply my reply to your message updating me on your bone density scan. I had shown interest in knowing how you made out and you chose to reply by private message. I sent you my good wishes and support. We are good now! 😊

One less thing off your plate. It is overwhelming to get so many messages to clear through. Please understand that it's ok to NOT be too hard on yourself about it and NOT answer each and every post.

Everyone here understands…. it's too much somedays and you have many, many obstacles. Be kind to yourself. 💕Rachel

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@rwinney

@sunnyflower Listen, you dont need to reply to my private message at all my dear. It was simply my reply to your message updating me on your bone density scan. I had shown interest in knowing how you made out and you chose to reply by private message. I sent you my good wishes and support. We are good now! 😊

One less thing off your plate. It is overwhelming to get so many messages to clear through. Please understand that it's ok to NOT be too hard on yourself about it and NOT answer each and every post.

Everyone here understands…. it's too much somedays and you have many, many obstacles. Be kind to yourself. 💕Rachel

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P.S. The Jesus post was from Lori Renee

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@rwinney

@sunnyflower Hi there. I was wondering if you noticed my reply to you in private message a few days back? Just didnt want you to think I never responded. 😊

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I hope I didn’t miss something

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@sunnyflower

Oh my gracious! I never knew small fiber neuropathy could turn into large fiber neuropathy! I am already extremely numb over possibly 75% of my body! I cannot feel that I am wet when I am in a swimming pool. I can only feel temperature and pressure. It is the most bizarre thing in the world to be numb yet burning and stinging at the same time. Go figure!

I guess I will have to learn about this possibility of the changes in neuropathy that can take place. This this disease is by far one of my more brutal diseases and the treatment, Gabapentin, can't stand the side effects! I find it interferes with tracking, memory, concentration, Focus, judgement, coordination, Etc. As I've said before, some of these are symptoms of fibromyalgia and they call that fibro fog. Then, some of my diseases and medicines for those have the same side effects. I guess I'm really special LOL! 😊😁

As difficult as it is to be a patient of so many afflictions, I completely trust God in my circumstance because I know Him well enough to know that He has a higher purpose in it and that it is only temporary. Were it not for Him and His ever-presence, peace and comfort, there's no way I would have made it through all this which by the way keeps coming!

Thank you all for being such a great support and wealth of knowledge! I am extremely thankful for each one of you and wish you all many, many blessings! Sunny flower. 😊

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I really wish they’d stop pushing gabapentin. It did not help my pain and they had me on the highest dose possible. I also was always off balance.

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@bustrbrwn22

I really wish they’d stop pushing gabapentin. It did not help my pain and they had me on the highest dose possible. I also was always off balance.

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@bustrbrwn22 @sunnyflower I took the highest amounts of Gabapentin without any help, and at that level, I always thought I was going to fall. My balance was utterly messed up, but my Doc said it probably was not from Gabapentin. I trusted my own judgement, weaned myself off, and now, my balance is normal again. However, if it helps in anyway, and you can manage the side effects, then it is worth taking. My best to you ladies, Lori Renee

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I had a EMG/ nerve conduction test which came our positive. I am anxious to hear results. Does anyone know how long this usually takes. It was sent to Mayo.

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@lorirenee1

@bustrbrwn22 @sunnyflower I took the highest amounts of Gabapentin without any help, and at that level, I always thought I was going to fall. My balance was utterly messed up, but my Doc said it probably was not from Gabapentin. I trusted my own judgement, weaned myself off, and now, my balance is normal again. However, if it helps in anyway, and you can manage the side effects, then it is worth taking. My best to you ladies, Lori Renee

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Thank you Lori Renee! 😊

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