1. < Neuropathy

Diagnosed with Peripheral Neuropathy, or not??

Posted by pkh3381 @pkh3381, Sep 5, 2023

I was diagnosed with Peripheal Neuropathy by a neurologist years ago and treated with Gabapentin, which I also took to manage seizures. As a referral patient to Mayo Neurology for an involuntary body sway affecting my walking and balance, I was worked up for P.N., but the Mayo neurologist, Dr Z, told me that I did not have P.N., yet he increased my Gabapentin to 2300 mg a day to help me with that and sharp pains I get in my head. Because of my body sway, I could not tolerate the large dosage of Gabapentin per day and ended up falling. My former neurologist who originally diagnosed me the P.N. and treated me for it did annual nerve testing [EMG?, I don't remember the name of the test], confirming the Dx, so I am left very confused. I certainly have symptoms on P.N., both legs, from just beneath the knees down [you can actually "see" the "line" in my calves], and it is severely worsening. I am taking the Gabapentin for it, at a lower dosage of 1800 mg [2 300 mg tabs 3x daily], but it is scaring me because of the way my feet and toes feel, that I way lose them to the P.N. [I have read about amputation for it online], feeling like the Drs [neurologists and podiatrist] are not taking me seriously. Responses would be greatly appreciated. I will sign this input with "P".

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

bettyg81pain | @bettyg81pain | Dec 29, 2023
In reply to @njed "lrobinson - I would suggest your husband does apply at Mayo. I am not a diabetic;..." + (show)
@njed

lrobinson - I would suggest your husband does apply at Mayo. I am not a diabetic; I do not drink alcohol and I have no pain in feet, legs or hands. Yet, I have sensory motor peripheral neuropathy (idiopathic) with severe numbness and like Ray, poor balance. I was successful in securing an appointment in early 2020. Be prepared to submit any and all information on tests that has been performed. In my opinion, you won't find a better place. I wish you and your husband success in getting to the bottom of his problem. Ed

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Did you ever discover what caused your neuropathy or how to successfully live a better life without numbness?

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1 reply
lrobinson | @lrobinson | Dec 29, 2023
In reply to @lrobinson "My husband was diagnosed by our local neurolgist and I am thinking of getting a second..." + (show)
@lrobinson

My husband was diagnosed by our local neurolgist and I am thinking of getting a second opinion at the Mayo Clinic

The reasons why I am thinking that it may be the wrong diagnoses is that he has no pain in his legs, feet or hands. He is not a diabetic, he is not an alcoholic and was able to walk just fine a few months ago.

A few months ago he fell and went to get his head checked out because he is on blood thinners at the ER. Everything looked good. Then a month later he cannot walk. A few months ago he played golf as much as twice a week

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They really never found out. He fell and hit his head, he could walk ok but a few weeks later he had to start using a cane because he was weak and on stable and now he is using a walker. All this is about 8 weeks,
I'm not really sure they have they correct diagnosis.
He can feel his hands and feet ok, no pain. Its like he cannot control his leg movements and very weak.

We have contacted some friends where their son is a Neurosurgeon. He talked to us and told us to get a Thoracic MRI and to send him all the tests and blood work. They know us very well and now the activity level my husband was on.

Thanks to friends!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 29, 2023
In reply to @lrobinson "My husband was diagnosed by our local neurolgist and I am thinking of getting a second..." + (show)
@lrobinson

My husband was diagnosed by our local neurolgist and I am thinking of getting a second opinion at the Mayo Clinic

The reasons why I am thinking that it may be the wrong diagnoses is that he has no pain in his legs, feet or hands. He is not a diabetic, he is not an alcoholic and was able to walk just fine a few months ago.

A few months ago he fell and went to get his head checked out because he is on blood thinners at the ER. Everything looked good. Then a month later he cannot walk. A few months ago he played golf as much as twice a week

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Hi @lrobinson, a second opinion sounds like it would be a good idea. If you would like to request an appointment with Mayo Clinic neurology experts, you can get started here: http://mayocl.in/1mtmR63

You may also be interested in the comments in these related discussions:

- Diagnosed with Peripheal Neuropathy, or not?? https://connect.mayoclinic.org/discussion/diagnosed-with-peripheal-neuropathy-or-not/
- Is it Peripheral neuropathy? https://connect.mayoclinic.org/discussion/is-it-peripheral-neuropathy/

The change in your husband must be worrisome for you. Does he talk about it with you? How are YOU doing?

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NJ Ed | @njed | Dec 30, 2023
In reply to @bettyg81pain "Did you ever discover what caused your neuropathy or how to successfully live a better life..." + (show)
@bettyg81pain

Did you ever discover what caused your neuropathy or how to successfully live a better life without numbness?

Jump to this post

@bettyg81pain - Hi, if your question is directed to me, thru many tests, I have no cause for the neuropathy. My numbness is severe and always feels like I am wearing tight boots. Due to numbness, balance is not good. Your question, without numbness? Don't know. I suggest walking as much as possible, remain as active as you can, and you can live a good quality of life with numbness. Ed

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1 reply
SKY | @michhino | Dec 30, 2023

I'm 55. I am a diabetic since 2017 and diabetic neuropathy started with my feet (tingling, numb, painful nerve strikes, etc..) in 2018 which nerve damages eventually spread into my calves and thighs plus waist. Until this day(2023), I have been dealing with incurable, unmanaged, uncontrollable diabetes II and painful lower body neuropathy (PM).

After all the doctors, neurologist, emergency rooms, hospitals, etc.. , plus prescribed medications (pre-gabapentin/gabapentin, Juniva, Metformin, Duloxetine, etc.. I awfully regret to spend thousands and thousands of dollars (Out of Pocket and/or Insurance)…

After 5 years with such conditions, you DO NOT want the neuropathy (PN-nerve damage) to quickly spread and affect your entire feet, calves, thighs, waist and hands as it is an extremely terrible feeling along with very poor state of mind, anxiety, stress, nervousness with daily activities, etc.. And not to mention, impotent for the last 4 years and specialized doctor(s) want 20K to make you believe that they can help with it. I declined!

Sadly, real answer for these serious mental and health complications and conditions were experienced as "NO CURE" ! The final solution mentioned was to amputate feet, legs, and hands. I could not live with myself with such decision. I will continue to endure and suffer which I have accepted to convince mind it is a part of the remaining style way of my life. Most importantly, my disability claim was denied with lawyers and by judge. I was devastated!!!

To say the least, I am attempting to remain positive with the job market. Currently, unemployed. I adopted a 4 year dog (German Shepherd) to help encourage walking at least 4 times a week which helps body, muscles, and aggravating feet and leg nerves to simply ignore the pain and discomfort.

My dog is amazing! I seriously regret not adopting dog long ago.

My advice is to eat healthy, "exercise', and most definitely "Save your Money"…

My prayers are with you …

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 30, 2023
In reply to @njed "@bettyg81pain - Hi, if your question is directed to me, thru many tests, I have no..." + (show)
@njed

@bettyg81pain - Hi, if your question is directed to me, thru many tests, I have no cause for the neuropathy. My numbness is severe and always feels like I am wearing tight boots. Due to numbness, balance is not good. Your question, without numbness? Don't know. I suggest walking as much as possible, remain as active as you can, and you can live a good quality of life with numbness. Ed

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@bettyg81pain - I have similar numbness only symptoms like @njed where my legs feel like I'm wearing tight boots but my issue is I kind of am wearing tight boots with my compression sock up to below the knees. If you haven't already seen it, the Foundation for Peripheral Neuropathy has a lot of information on living well with neuropathy - https://www.foundationforpn.org/living-well/. It's required me to make some lifestyle adjustments but it has helped me get through the day so to speak.

Hoping your 2024 will be much better with less neuropathy symptoms.

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fred101 | @fred101 | Dec 30, 2023
In reply to @johnbishop "@pkh3381, You mentioned in an earlier post that you had Functional Neurological Disorder (FND). I'm wondering..." + (show)
@johnbishop

@pkh3381, You mentioned in an earlier post that you had Functional Neurological Disorder (FND). I'm wondering if some of the PN type symptoms you are having may be related. I'm not sure if you have seen the FNDHope.org website but it has a lot of information that you might find helpful - https://fndhope.org/.

I know it must be extremely difficult trying to navigate your symptoms and treatments over the years. Have you ever discussed FND as a possible cause of your neuropathy symptoms with your doctor/neurologist?

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Thank you very much, I will check it out for sure. Happy New Year and Semper Fi.

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1 reply
lrobinson | @lrobinson | Dec 31, 2023
In reply to @michhino "I'm 55. I am a diabetic since 2017 and diabetic neuropathy started with my feet (tingling,..." + (show)
@michhino

I'm 55. I am a diabetic since 2017 and diabetic neuropathy started with my feet (tingling, numb, painful nerve strikes, etc..) in 2018 which nerve damages eventually spread into my calves and thighs plus waist. Until this day(2023), I have been dealing with incurable, unmanaged, uncontrollable diabetes II and painful lower body neuropathy (PM).

After all the doctors, neurologist, emergency rooms, hospitals, etc.. , plus prescribed medications (pre-gabapentin/gabapentin, Juniva, Metformin, Duloxetine, etc.. I awfully regret to spend thousands and thousands of dollars (Out of Pocket and/or Insurance)…

After 5 years with such conditions, you DO NOT want the neuropathy (PN-nerve damage) to quickly spread and affect your entire feet, calves, thighs, waist and hands as it is an extremely terrible feeling along with very poor state of mind, anxiety, stress, nervousness with daily activities, etc.. And not to mention, impotent for the last 4 years and specialized doctor(s) want 20K to make you believe that they can help with it. I declined!

Sadly, real answer for these serious mental and health complications and conditions were experienced as "NO CURE" ! The final solution mentioned was to amputate feet, legs, and hands. I could not live with myself with such decision. I will continue to endure and suffer which I have accepted to convince mind it is a part of the remaining style way of my life. Most importantly, my disability claim was denied with lawyers and by judge. I was devastated!!!

To say the least, I am attempting to remain positive with the job market. Currently, unemployed. I adopted a 4 year dog (German Shepherd) to help encourage walking at least 4 times a week which helps body, muscles, and aggravating feet and leg nerves to simply ignore the pain and discomfort.

My dog is amazing! I seriously regret not adopting dog long ago.

My advice is to eat healthy, "exercise', and most definitely "Save your Money"…

My prayers are with you …

Jump to this post

Thank you, I aways knew that dogs can do so much for us!!

REPLY
seidholz | @seidholz | Jan 1 9:34am
In reply to @fred101 "Thank you very much, I will check it out for sure. Happy New Year and Semper..." + (show)
@fred101

Thank you very much, I will check it out for sure. Happy New Year and Semper Fi.

Jump to this post

I went through tests for PN at Mayo, Northwestern and UNMC with no definitive diagnosis. Mayo had a genetic test done and found several things that might indicate that it was inherited. I don’t have pain or pins and needles just numbness. We tried Gabepentin and it had no effect on the PN but lots of undesirable side effects so I quit that. The best thing I did was to get involved in the Foundation for Peripheral Neuropathy as they provide lots of suggestions for living with PN and not stressing about it. And many thanks to Dr Dyke and the fabulous staff at Mayo for finally coming to a conclusion

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fred101 | @fred101 | Jan 1 4:09pm

Thanks for the informative and inciteful information. Mu PN is getting worse daily and I believe there is really nothing that can be done, other than a positive attitude, mild exercise, and taking acupuncture. I have tried aboud everything there is out there and always a let down as no one really has a handle on things when it comes to this crazy condition. At least I have lived to be 80, which is much longer than many of my fellow veterans. All the best to any and everyone involved in this and we wish everyone a very healthy, happy, and safe 2024. Semper Fi.

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