Living with Neuropathy - Welcome to the group

Hello @spanning, I use Google and Google Scholar (https://scholar.google.com/) a lot in my searches and sometimes the results can be misleading and sometimes pretty scary. I try find articles that are done by reputable organizations and the latest written dates which is where Google Scholar helps a little because you can sort the search results links by year at the left. I do know that chemotherapy has a nasty side effect of neuropathy since it also damages nerves.

I have no medical training or background but I am a little surprised when I read that the neurologist prescribed gabapentin if you don't have any pain and just have numbness all over. The reason I say that is before I was diagnosed with small fiber PN my primary care doctor gave me gabapentin when I complained about the numbness in my feet and legs. It was only after a few weeks and no difference that I told her it wasn't working and she brought in another doctor who asked me more questions, found out I had no associated pain, and told me gabapentin doesn't do anything for numbness. This is when I had an EMG and a referral to a Mayo Clinic neurologist who diagnosed me with small fiber PN.

Here's a few references on chemotherapy induced neuropathy:

Physical interventions for patients suffering from chemotherapy-induced polyneuropathy
-- https://link.springer.com/article/10.1007/s00520-018-4071-y

Peripheral Neuropathy Caused by Chemotherapy
-- https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/peripheral-neuropathy.html

Chemotherapy-induced peripheral neuropathy: an update on the current understanding
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4920214/

I'm tagging @artscaping and @jenniferhunter to see if they may be able to offer some suggestions for you.

@spanning, I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

John

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Hi @spanning, I did read through your post and it does help others understand your symptoms and what you are going through. That's why I posted the links to the other group discussions hoping you might read through them to see if anything sounds familiar. If you do see a post by someone you can easily pose a question to that member by using their username with the @ sign. That way they will get an email notification that their name was mentioned in a post.

Are you trying to get an answer for any specific questions?

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Is there any treatment that stops this polyneuropathy?
Drs have not told me what to expect, worse case scenario ...

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Hello @spanning, I use Google and Google Scholar (https://scholar.google.com/) a lot in my searches and sometimes the results can be misleading and sometimes pretty scary. I try find articles that are done by reputable organizations and the latest written dates which is where Google Scholar helps a little because you can sort the search results links by year at the left. I do know that chemotherapy has a nasty side effect of neuropathy since it also damages nerves.

I have no medical training or background but I am a little surprised when I read that the neurologist prescribed gabapentin if you don't have any pain and just have numbness all over. The reason I say that is before I was diagnosed with small fiber PN my primary care doctor gave me gabapentin when I complained about the numbness in my feet and legs. It was only after a few weeks and no difference that I told her it wasn't working and she brought in another doctor who asked me more questions, found out I had no associated pain, and told me gabapentin doesn't do anything for numbness. This is when I had an EMG and a referral to a Mayo Clinic neurologist who diagnosed me with small fiber PN.

Here's a few references on chemotherapy induced neuropathy:

Physical interventions for patients suffering from chemotherapy-induced polyneuropathy
-- https://link.springer.com/article/10.1007/s00520-018-4071-y

Peripheral Neuropathy Caused by Chemotherapy
-- https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/peripheral-neuropathy.html

Chemotherapy-induced peripheral neuropathy: an update on the current understanding
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4920214/

I'm tagging @artscaping and @jenniferhunter to see if they may be able to offer some suggestions for you.

@spanning, I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

John

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Thank you for connecting me with the articles on CIPN . I had a little bit of neuropathy on my and in my fingers while on CHEMO, which was almost 4years ago.
1.DoesCIPN occur several years after treatment, and continue to get worse?
2.since I have issues with auto immune problems already should ‘t The Dr’s be checking for other possible causes?
3.perhaps I missed it, and I didn’t understand some of the medical terms, but I didn’t see any specifics for middle ear balance not working at all. My eyes are working over time to try to provide balance.

I tried getting to see a local endocrinologist, but there is a year and a half wait. I have asked my dr to refer me to Mayo Rochester , so I am waiting to hear if I can get an appointment.
Thank you.

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Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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I found out my 'type' of neuropathy today ... my neurologist says "axonal sensory neuropathy", and it's severe. Do any of you have that? She recommends Lyrica at night and gabapentin during the day. She also says I have RLS. It was the tazer test that told them that my condition is severe - I jumped about a foot off the table when they zapped me behind the knees. I knew they did 4 more but I don't know where as I didn't feel them.
Do any of you have "axonal sensory neuropathy"?
Peggy

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I found out my 'type' of neuropathy today ... my neurologist says "axonal sensory neuropathy", and it's severe. Do any of you have that? She recommends Lyrica at night and gabapentin during the day. She also says I have RLS. It was the tazer test that told them that my condition is severe - I jumped about a foot off the table when they zapped me behind the knees. I knew they did 4 more but I don't know where as I didn't feel them.
Do any of you have "axonal sensory neuropathy"?
Peggy

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