Small Fiber Neuropathy turning in to Large Fiber Neuropathy

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.

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! 😉

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 ☺

Haha! Go Mrs. Bishop!!

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.)

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?

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

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.

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.

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. 😊