1. < Neuropathy

Neuropathy symptoms come and go - is this typical?

Posted by kmst1994 @kmst1994, Jun 26, 2022

Hello everyone. I have an upcoming appointment with the neurologist to discuss getting the SFN biopsy (if he even does this or not). The last time I met with him I was not impressed but I am giving him one more chance. Anyway, my symptoms (mostly tingling/prickling/burning of my feet, ankles, and shins) do come and go. I sometimes have days with very minor or no symptoms. Is this typical? Or, is it more typical to not have symptoms come and go? These symptoms started a little more than a year ago. Any info is greatly appreciated!

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

NJ Ed | @njed | Jul 2, 2022
In reply to @pacer3702 "Damage to the larger of the small nerve fibers can be detected on an EMG. That..." + (show)
@pacer3702

Damage to the larger of the small nerve fibers can be detected on an EMG. That is how my sensory (small-fiber) peripheral neuropathy was diagnosed. I also have motor (large fiber) nerve damage. The cause was an adverse reaction to the Covid vaccines.

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Hi - you had no symptoms at all before getting the covid vaccine? I have both motor and sensory PN which I had slowly progressing prior to the first covid vaccine and then both became much more intense in the early part of 2020. Interesting!

REPLY
1 reply
tedpellerin | @tedpellerin | Jul 2, 2022

Hi njed,
My poly-SFN is only 3 years old, unconfirmed by skin punch, progressing nicely (a neurologist might say) to the point that muscle twitching, legs cramping are becoming debilitating (loss of sleep mostly). I feel like 4 mRNA shots haven't had any effect except to say that they haven't helped. I'm taking B-12, acetyl l carnitine and gabapentin (1500mg).
I would rate my neuropathy as having crossed to the intense threshold just this week.
Not sure I can return to my science teacher job in the fall unless muscles settle down.
Ted

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 2, 2022
In reply to @tedpellerin "Hi njed, My poly-SFN is only 3 years old, unconfirmed by skin punch, progressing nicely (a..." + (show)
@tedpellerin

Hi njed,
My poly-SFN is only 3 years old, unconfirmed by skin punch, progressing nicely (a neurologist might say) to the point that muscle twitching, legs cramping are becoming debilitating (loss of sleep mostly). I feel like 4 mRNA shots haven't had any effect except to say that they haven't helped. I'm taking B-12, acetyl l carnitine and gabapentin (1500mg).
I would rate my neuropathy as having crossed to the intense threshold just this week.
Not sure I can return to my science teacher job in the fall unless muscles settle down.
Ted

Jump to this post

Hi @tedpellerin, Welcome to Connect. I've also had the 4 Pfizer shots and it hasn't affected my neuropathy one way or another. I did have the normal side effects and also contracted COVID between the first and second booster shots for COVID. You might find the following discussion interesting if not helpful -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You mentioned you are a science teacher. Have you done any research on your neuropathy symptoms and available treatment options including complementary and alternative ones?

REPLY
pacer3702 | @pacer3702 | Jul 2, 2022
In reply to @njed "Hi - you had no symptoms at all before getting the covid vaccine? I have both..." + (show)
@njed

Hi - you had no symptoms at all before getting the covid vaccine? I have both motor and sensory PN which I had slowly progressing prior to the first covid vaccine and then both became much more intense in the early part of 2020. Interesting!

Jump to this post

I had minor pre-existing nerve damage in my feet from an antibiotic that did not affect my life and had been stable for years. At the time of my first Pfizer vaccination, I had been walking 9-12 miles per week without issues. Two weeks later, I developed toe spasms, which then progressed to sensory and motor peripheral neuropathy. (My first EMG was essentially normal.) The likely cause is an autoimmune response triggered by the spike protein encoded by the vaccine. My ANA titer was increasing at the time that my symptoms peaked. A great source of information about vaccine injuries is the Neuro V Long-Haulers group on Facebook. There are about 3500 vaccine-injured members.

REPLY
1 reply
NJ Ed | @njed | Jul 2, 2022
In reply to @pacer3702 "I had minor pre-existing nerve damage in my feet from an antibiotic that did not affect..." + (show)
@pacer3702

I had minor pre-existing nerve damage in my feet from an antibiotic that did not affect my life and had been stable for years. At the time of my first Pfizer vaccination, I had been walking 9-12 miles per week without issues. Two weeks later, I developed toe spasms, which then progressed to sensory and motor peripheral neuropathy. (My first EMG was essentially normal.) The likely cause is an autoimmune response triggered by the spike protein encoded by the vaccine. My ANA titer was increasing at the time that my symptoms peaked. A great source of information about vaccine injuries is the Neuro V Long-Haulers group on Facebook. There are about 3500 vaccine-injured members.

Jump to this post

Thanks for the information. Very interesting,

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