Small Fiber Neuropathy turning in to Large Fiber Neuropathy

Posted by rwinney @rwinney, Feb 20 9:45pm

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

Hi Rachel @rwinney, That's kind of what my Mayo neurologist told me was going to happen eventually and was what started me searching for my own answers after he also said there were no treatments available to help with numbness symptoms. I'm happy to have found the Facebook group – Solutions to the Pain & Discomfort of Peripheral Neuropathy. Since I started taking the protocol supplements in late 2016, the numbness seems to have receded some and slowed or stopped the progression of my PN. I wouldn't mind having another EMG test to see if my PN has lessened but it's not worth the cost for me.

Liked by rwinney, sunnyflower

REPLY
@johnbishop

Hi Rachel @rwinney, That's kind of what my Mayo neurologist told me was going to happen eventually and was what started me searching for my own answers after he also said there were no treatments available to help with numbness symptoms. I'm happy to have found the Facebook group – Solutions to the Pain & Discomfort of Peripheral Neuropathy. Since I started taking the protocol supplements in late 2016, the numbness seems to have receded some and slowed or stopped the progression of my PN. I wouldn't mind having another EMG test to see if my PN has lessened but it's not worth the cost for me.

Jump to this post

I hear ya on that. Maybe if your test showed lessening, you could get paid from the fb Protocol group and be their poster child! 😉

REPLY
@rwinney

I hear ya on that. Maybe if your test showed lessening, you could get paid from the fb Protocol group and be their poster child! 😉

Jump to this post

Rachel, the group has many poster children that were worse off than me. I know of several that were bedridden and unable to do much of anything and are now symptom free. It's a 501c3 group anyway which is why I don't mind donating to them to help members less fortunate than myself. I'm just happy to have a lovely caretaker wife who is in much better health – she's not happy if she doesn't get 15,000 to 20,000 steps a day in. And…when I need it, she gives me an attitude adjustment ☺

Liked by Lisa Lucier, rwinney

REPLY
@johnbishop

Rachel, the group has many poster children that were worse off than me. I know of several that were bedridden and unable to do much of anything and are now symptom free. It's a 501c3 group anyway which is why I don't mind donating to them to help members less fortunate than myself. I'm just happy to have a lovely caretaker wife who is in much better health – she's not happy if she doesn't get 15,000 to 20,000 steps a day in. And…when I need it, she gives me an attitude adjustment ☺

Jump to this post

Haha! Go Mrs. Bishop!!

REPLY

Yes, an emg can be negative and change in time to positive. I have a fairly recent (6 months) diagnosis of large fiber neuropathy. It didn't show up on a lower body emg 4 years ago when I had a negative MS workup. (Looking, back, I had some mild neuropathy symptoms at least 5 years before that.) The large fiber neuropathy did show up on a current emg which was prescribed because I had developed left-side foot drop. In June my neurology PA prescribed an upper emg because of hand symptoms (numbness, pain, weakness, etc.) It showed moderate severity carpal tunnel in both hands. The testing neurologist noted that the carpal tunnel had neuropathy as an underlying condition and that this was a sign that the neuropathy was starting to affect my hands, even though it didn't show up as a separate finding on the emg (but most likely would in the future.)

REPLY
@grandmalele

Yes, an emg can be negative and change in time to positive. I have a fairly recent (6 months) diagnosis of large fiber neuropathy. It didn't show up on a lower body emg 4 years ago when I had a negative MS workup. (Looking, back, I had some mild neuropathy symptoms at least 5 years before that.) The large fiber neuropathy did show up on a current emg which was prescribed because I had developed left-side foot drop. In June my neurology PA prescribed an upper emg because of hand symptoms (numbness, pain, weakness, etc.) It showed moderate severity carpal tunnel in both hands. The testing neurologist noted that the carpal tunnel had neuropathy as an underlying condition and that this was a sign that the neuropathy was starting to affect my hands, even though it didn't show up as a separate finding on the emg (but most likely would in the future.)

Jump to this post

Hello @grandmalele, I see that you joined a last month and this is your first post. Welcome to Mayo Clinic Connect. Thank you for sharing your experience. I also have carpal tunnel syndrome in both hands but it's not currently causing me much pain or numbness. I had thought about surgery a few years ago but decided it wasn't that bad yet. There is another discussion you may find helpful.

Carpal Tunnel Syndrome Or Tendonitis?: https://connect.mayoclinic.org/discussion/carpal-tunnel-syndrome-or-tendonitis/

Did your doctor or neurology PA suggest any treatments for the carpal tunnel?

Liked by rwinney

REPLY
@grandmalele

Yes, an emg can be negative and change in time to positive. I have a fairly recent (6 months) diagnosis of large fiber neuropathy. It didn't show up on a lower body emg 4 years ago when I had a negative MS workup. (Looking, back, I had some mild neuropathy symptoms at least 5 years before that.) The large fiber neuropathy did show up on a current emg which was prescribed because I had developed left-side foot drop. In June my neurology PA prescribed an upper emg because of hand symptoms (numbness, pain, weakness, etc.) It showed moderate severity carpal tunnel in both hands. The testing neurologist noted that the carpal tunnel had neuropathy as an underlying condition and that this was a sign that the neuropathy was starting to affect my hands, even though it didn't show up as a separate finding on the emg (but most likely would in the future.)

Jump to this post

Hello @grandmalele! Thank you very much for contributing to this important question. Its important to know and understand what people with neuropathy advancements should look out for. Your experience will help others learn. How awful it sounds to have this continuation of neuropathy. I'm so sorry you are affected in this way. Your hands sound quite painful. Do you find any relief for your neuropathy symptoms?

May today be peaceful for you.
Rachel

REPLY
@johnbishop

Rachel, the group has many poster children that were worse off than me. I know of several that were bedridden and unable to do much of anything and are now symptom free. It's a 501c3 group anyway which is why I don't mind donating to them to help members less fortunate than myself. I'm just happy to have a lovely caretaker wife who is in much better health – she's not happy if she doesn't get 15,000 to 20,000 steps a day in. And…when I need it, she gives me an attitude adjustment ☺

Jump to this post

Hi @johnbishop
You mention that the company selling the "protocol" (sounds like a Dan Brown novel) is a 501c3 corp.
Can you tell me the name of the corp? I do not participate in Facebook, so I can't easily get it myself.
Thanks in advance.

REPLY
@jeffrapp

Hi @johnbishop
You mention that the company selling the "protocol" (sounds like a Dan Brown novel) is a 501c3 corp.
Can you tell me the name of the corp? I do not participate in Facebook, so I can't easily get it myself.
Thanks in advance.

Jump to this post

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.

Liked by rwinney, HankB

REPLY
@johnbishop

Hi Rachel @rwinney, That's kind of what my Mayo neurologist told me was going to happen eventually and was what started me searching for my own answers after he also said there were no treatments available to help with numbness symptoms. I'm happy to have found the Facebook group – Solutions to the Pain & Discomfort of Peripheral Neuropathy. Since I started taking the protocol supplements in late 2016, the numbness seems to have receded some and slowed or stopped the progression of my PN. I wouldn't mind having another EMG test to see if my PN has lessened but it's not worth the cost for me.

Jump to this post

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. 😊

REPLY
@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. 😊

Jump to this post

@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. 😊

REPLY
@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. 😊

Jump to this post

@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

REPLY
@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

Jump to this post

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

REPLY
@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. 😊

Jump to this post

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. 😊💗

Liked by rwinney, HankB

REPLY
@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. 😊

Jump to this post

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. 😥

Liked by rwinney

REPLY
Please login or register to post a reply.