1. < Neuropathy
Mentor

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

Interested in more discussions like this? Go to the Neuropathy Support Group.

bustrbrwn22 | @bustrbrwn22 | Sep 5, 2020
In reply to @sunnyflower "Oh my gracious! I never knew small fiber neuropathy could turn into large fiber neuropathy! I..." + (show)
@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

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.

REPLY
1 reply
lorirenee1 | @lorirenee1 | Sep 5, 2020
In reply to @bustrbrwn22 "I really wish they’d stop pushing gabapentin. It did not help my pain and they had..." + (show)
@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.

Jump to this post

@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

REPLY
1 reply
kyc117 | @kyc117 | Sep 5, 2020

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.

REPLY
3 replies
sunnyflower | @sunnyflower | Sep 5, 2020
In reply to @lorirenee1 "@bustrbrwn22 @sunnyflower I took the highest amounts of Gabapentin without any help, and at that level,..." + (show)
@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

Jump to this post

Thank you Lori Renee! 😊

REPLY
sunnyflower | @sunnyflower | Sep 5, 2020
In reply to @rwinney "@Sunnyflower Listen, you dont need to reply to my private message at all my dear. It..." + (show)
@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

Jump to this post

Rachel, I REALLY genuinely want to reply to you! I am honored you would share that part of yourself with me and found what you said to be interesting. I feel awful that I can't find the message! 😰. 💗

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 5, 2020
In reply to @kyc117 "I had a EMG/ nerve conduction test which came our positive. I am anxious to hear..." + (show)
@kyc117

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.

Jump to this post

@kyc117 Keep us posted when they do come in. Good luck 🍀

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Sep 5, 2020
In reply to @kyc117 "I had a EMG/ nerve conduction test which came our positive. I am anxious to hear..." + (show)
@kyc117

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.

Jump to this post

@kyc117 If you have a Mayo Clinic patient account and can access the patient portal, tests usually are displayed within 24 to 48 hours (my experience), sometimes mine have been uploaded in less that 4 hours. Did your doctor give you any time frame for the results to be returned?

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 5, 2020
In reply to @kyc117 "I had a EMG/ nerve conduction test which came our positive. I am anxious to hear..." + (show)
@kyc117

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.

Jump to this post

@kyc117. It seems to me that it was a matter of days waiting for the results. The skin punch biopsy took longer. I always keep an eye on my various patient portals when I'm waiting for test results. How did you learn that it was positive without knowing the results?

I know that waiting is never easy. It's certainly not one of my strong suits.

Is this your first nerve conduction study? I had my first one a few years ago, and a month or so ago I had another one, to check on my progress - I asked my neurologist to retake several tests.

If this is your first, it will give your doctors a baseline to monitor your progress. You should be hearing soon, but if you haven't within the next few days, you should call the doctor.

I hope the best for you.

Jim

REPLY
sunnyflower | @sunnyflower | Sep 5, 2020
In reply to @jesfactsmon "@sunnyflower Hi Sunny, as a disclaimer, I am mostly a novice here like you so take..." + (show)
@jesfactsmon

@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

Jump to this post

Hello, yes, I mean private messages. Yes, looked in PM but have since learned that I was looking for a message from the wrong person so my problem has been resolved. No apologies necessary. Have a blessed day, both of you! Sunny 😊

REPLY
sunnyflower | @sunnyflower | Sep 5, 2020
In reply to @rwinney "P.S. The Jesus post was from Lori Renee" + (show)
@rwinney

P.S. The Jesus post was from Lori Renee

Jump to this post

Again, I 'm a real piece of work. 🤪🙃😩

REPLY
View MoreView Less
Please sign in or register to post a reply.