Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

@lesterjo

Hi every one! New to site. 6/25/2022. I had neck surgery in April 2021. Over a year ago. Now I have the two fingers on my right hand, that I cannot use. I went to an neurological Doctor Who gave me a EMG test. Then, she diagnosed me with having a ALS. She referred me to another doctor to confirm her findings. But, the next doctor felt that he could not say one way or the other whether I had ALS or not. So, that doctor said that because of prior surgeries to my spine and cervical spine, he cannot say for sure. Now they have sent me to an ALS specialist. So far, I have had one blood test, and I'm waiting to have two MRIs. One of my cervical spine and another of my thoracic spine. None of these doctors are close to my home. I live in New Jersey near the Atlantic ocean. And they sent me to an ALS specialist in Philadelphia. We will see what happens. I am certainly getting fed up with this runaround. I had, like I said, next surgery in April 2021.

And like they say, if it looks like a duck, if it acts like a duck. It must be a duck. It had only been one month since my neck surgery, when the third and fourth digit on my right hand acted up.
Remarkable!

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Hi @lesterjo, Welcome to Connect. It can be quite discouraging when trying to get a diagnosis and a treatment that helps. There is another discussion you might find helpful — Neuromuscular Testing and Waiting for ALS confirmation: https://connect.mayoclinic.org/discussion/neuromuscular-testing/.

When is your appointment with the ALS specialist in Philadelphia?

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@johnbishop

Hi @njed, Welcome to Connect. I think you are right, a pinched or compressed nerve can cause nerve pain and other symptoms. It sounds like you don't have any pain with your diagnosed idiopathic sensorimotor peripheral neuropathy, just the numbness.

Did your Mayo Clinic neurologist suggest or start any treatments?

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If I am fortunate about anything involving this, I do not have pain. No treatment plan other than to do physical therapy if possible and walk flat surfaces when possible. The thinking in 2020 by Mayo was that my issue could be genetic related which does often appear in 6th generation of life, I was 64 when this started. Went to Johns Hopkins in Baltimore, they came up with the same thinking, genetic. I've had blood work done in Phila for a variety of possibilities, all came back normal. My suspicion is that without a cause, a treatment plan is difficult, I am not diabetic. I do wear walk-on-flex which helps with balance.

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Yes I’m dealing with it and it’s very painful on a daily for me mine started with a shingle on my arm that the doctors thought was a spider bite later I found out it was shingles and I had nerve damage from shoulder to finger right arm I was told by several doctors to get the vaccine since then I did. I had it injected into the left arm now the left arm has just as much nerve damage as the right arm I’m also experiencing nerve damage in my left leg none of this happened prior to me taking this vaccine. My auto immune system is also off and they don’t know why I am so depressed and I cry on a daily due to the pain I really wish I could find help an explanation for this. 😰

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@daphnebattle

Yes I’m dealing with it and it’s very painful on a daily for me mine started with a shingle on my arm that the doctors thought was a spider bite later I found out it was shingles and I had nerve damage from shoulder to finger right arm I was told by several doctors to get the vaccine since then I did. I had it injected into the left arm now the left arm has just as much nerve damage as the right arm I’m also experiencing nerve damage in my left leg none of this happened prior to me taking this vaccine. My auto immune system is also off and they don’t know why I am so depressed and I cry on a daily due to the pain I really wish I could find help an explanation for this. 😰

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Welcome @daphnebattle, I can't imagine the pain you must be in from the shingles. Was it the Shingrix vaccine that you got?

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@johnbishop

Hi @lesterjo, Welcome to Connect. It can be quite discouraging when trying to get a diagnosis and a treatment that helps. There is another discussion you might find helpful — Neuromuscular Testing and Waiting for ALS confirmation: https://connect.mayoclinic.org/discussion/neuromuscular-testing/.

When is your appointment with the ALS specialist in Philadelphia?

Jump to this post

July 26. 2022 2:15 PM.

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@lesterjo

Hi every one! New to site. 6/25/2022. I had neck surgery in April 2021. Over a year ago. Now I have the two fingers on my right hand, that I cannot use. I went to an neurological Doctor Who gave me a EMG test. Then, she diagnosed me with having a ALS. She referred me to another doctor to confirm her findings. But, the next doctor felt that he could not say one way or the other whether I had ALS or not. So, that doctor said that because of prior surgeries to my spine and cervical spine, he cannot say for sure. Now they have sent me to an ALS specialist. So far, I have had one blood test, and I'm waiting to have two MRIs. One of my cervical spine and another of my thoracic spine. None of these doctors are close to my home. I live in New Jersey near the Atlantic ocean. And they sent me to an ALS specialist in Philadelphia. We will see what happens. I am certainly getting fed up with this runaround. I had, like I said, next surgery in April 2021.

And like they say, if it looks like a duck, if it acts like a duck. It must be a duck. It had only been one month since my neck surgery, when the third and fourth digit on my right hand acted up.
Remarkable!

Jump to this post

I think there is an ALS specialist at Hackensack Meridian in Neptune NJ…good luck !

REPLY
@johnbishop

Welcome @daphnebattle, I can't imagine the pain you must be in from the shingles. Was it the Shingrix vaccine that you got?

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Yes I hate I ever to it!! All of this stems from 4 little bumps that appeared on my right arm. The dermatologist that said it was a spider bite said that it was later diagnosed too late to treat with a shot to prevent nerve damage she knew I would get it. I’m awaiting a appointment with Mayo I pray they can help me get my life back!!

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@njed

If I am fortunate about anything involving this, I do not have pain. No treatment plan other than to do physical therapy if possible and walk flat surfaces when possible. The thinking in 2020 by Mayo was that my issue could be genetic related which does often appear in 6th generation of life, I was 64 when this started. Went to Johns Hopkins in Baltimore, they came up with the same thinking, genetic. I've had blood work done in Phila for a variety of possibilities, all came back normal. My suspicion is that without a cause, a treatment plan is difficult, I am not diabetic. I do wear walk-on-flex which helps with balance.

Jump to this post

Hi, I have a very similar condition as you. Do you take Gabapentin? I take Gabapentin 900 mg
2x per day. Also what is "walk-on flex"? I am 79 and 1st discovered this condition about 45 years ago. It started with some numbness in both lower legs and feet and has progressed to where I have a hard time balancing. Thank you in advance for your response.

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@chuckc

Hi, I have a very similar condition as you. Do you take Gabapentin? I take Gabapentin 900 mg
2x per day. Also what is "walk-on flex"? I am 79 and 1st discovered this condition about 45 years ago. It started with some numbness in both lower legs and feet and has progressed to where I have a hard time balancing. Thank you in advance for your response.

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Chuckkc – I'm 72 yrs old, 2 yrs ago, I was in P. Therapy and it was suggested that I try orthotics, got a prescription from primary doc which Medicare covered the cost of these supports. I suggest you google ottoboxk walk on flex…..you will see what I'm talking about. They work well for me as I have drop foot, these allow a more normal heel to toe walk. Eliminates slapping of feet. Balance comes from below my knees, for me at least 70% improvement in balance. And, helps much in driving as well. Gabapentin did not work, I had adverse effects on 100 mg 3 X daily … anger…common side effect with some patients. Neurologist suggested in my case, not to use Lyrica as well.
Ed

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@chuckc

Hi, I have a very similar condition as you. Do you take Gabapentin? I take Gabapentin 900 mg
2x per day. Also what is "walk-on flex"? I am 79 and 1st discovered this condition about 45 years ago. It started with some numbness in both lower legs and feet and has progressed to where I have a hard time balancing. Thank you in advance for your response.

Jump to this post

Hello @chuckc, I would like to add my welcome to Connect along with @njed and others. Balance is an issue with a lot of us with neuropathy. I thought I would share the link to the product mentioned by @njed since it might be something that would be helpful for me also even though I don't have dropfoot.

WalkOn Flex: https://www.ottobock.com/en-us/product/28U22

You might also find the following discussion helpful — Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you like to walk for exercise?

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@johnbishop

Hello @chuckc, I would like to add my welcome to Connect along with @njed and others. Balance is an issue with a lot of us with neuropathy. I thought I would share the link to the product mentioned by @njed since it might be something that would be helpful for me also even though I don't have dropfoot.

WalkOn Flex: https://www.ottobock.com/en-us/product/28U22

You might also find the following discussion helpful — Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you like to walk for exercise?

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Yes l like to walk but hills and bumpy terrain is a problem for me.

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@njed

Hi – I am very new to this site.
I have idiopathic sensorimotor peripheral neuropathy, got official dx at Mayo in MN in Feb 2020 but been dealing with this since 2016. Started with numbness both feet 2015, drop foot in both 2017, about 70% numbness shins down to toes. Since Aug 2020, unusual sweating upper part of body. I do not have dry eyes, mouth. Small amounts of neuropathy in finger tips. I've heard pinched nerve from a fall can trigger neuropathy.

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I have peripheral nueropathy; from my left knee down to my big toe. There doesn't seem to be anything to do about it.

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