Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

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

@dwf75

I have had chemo induced neuropathy in both feet, finger tips, and left leg from the knee down since 2020 when I was diagnosed with ovarian cancer. Nobody at the hospital prepared me for neuropathy following my first chemo so I had nothing for the pain. The pain was so bad it was the closest I came to wanting to kill myself. I was prescribed Lyrica (can't do gabapentin) which helped tremendously during and after chemo. Off the Lyrica for nearly 2 years and now intermittent shooting pain is starting up again. Tried Lyrica recently but had to go off it because of dizziness. In addition to neuropathy, I have constant back pain (5 surgeries), have hypothyroidism, and very recently was diagnosed as pre-diabetic. My PT gave me the name of a neurologist for the neuropathy who I just recently saw. She ordered a battery of blood tests and to my surprise I learned I'm pre-diabetic. Thankfully my A1C is at the very bottom of the range. After talking with my older brother, I'm treating that through diet and exercise. My B12 came back normal, but was low. The neurologist told me B12 can have an affect on neuropathy as well as other things. I will start taking a B12 vitamin starting tomorrow. I'm considering replacing my PCP who I've been seeing for many years. My mother died from diabetes and my older brother is pre-diabetic. All of this is in my family history but she never once did an A1C blood test and I'm soon to be 76. As for the neuropathy, I've learned chemo, diabetes, and thyroid disease are all causes. I feel like I only need my PCP these days to write scripts or verify or deny what I already know. Sometimes I feel like I'm the doctor!

Jump to this post

> Sometimes I feel like I'm the doctor!

Ain't that the truth!

REPLY
@SusanEllen66

You are welcome. You’re not alone!

Jump to this post

Is yours bad? Mine is horrible.

REPLY
@johnbishop

Hi Donald, We removed your personal email address from your message above to @artscaping. We recommend not posting personal contact information in the public forum. You can use the secure private message function to exchange contact information with another member.

Jump to this post

John,

Please continue to refer many of the posters to my info on Intraneural Facilitation Treatment (INF) at Loma Linda Hospital, California.
https://lluh.org/services/neuropathic-therapy-center

This therapeutic treatment works on various forms of neuropathy, as well as many many other health issues.
Their staff is more than happy to take your calls to explore what their program can do for you.

They also developed medical thermo imaging testing to pinpoint specifically the category of foods (Gluten, Dairy or Sugars) causing your inflammation. This test was invaluable to removing the guesswork.

Just this past May, my friend Sam's pain levels were 8-9 and in 6 weeks (12 sessions) at Loma Linda INF program his pain was reduced by 35% and it will continue. As a result he is off all his neuropathy and pain meds and their side effects. He now sleeps through the night. He has found a new lease on life. Loma Linda has trained him how to continue their treatment and this week he is currently touring Switzerland on his own. It was an amazing gift to him that my research lead me to their program. Nothing else was working for him for years and he was going from Dr. to Dr. looking for a solution.

My best to all of you,
ShirleyS55

REPLY
@johnbishop

Have you tried any complementary therapies? The Foundation for Peripheral Neuropathy has a lot of information on things to try that others have found helpful.

-- Complementary Therapies: https://www.foundationforpn.org/living-well/complementary-therapies/

Jump to this post

I’m in Texas. Is there a place close to Dallas or Waxahachie? All everyone tells me is there is no hope for me.

REPLY
@pamelaz

I’m in Texas. Is there a place close to Dallas or Waxahachie? All everyone tells me is there is no hope for me.

Jump to this post

@pamelaz, Here is list of teaching hospitals in Texas that may be a good place to seek help with your different symptoms - https://thotonline.org/our-members/

Which of your symptoms is most bothersome for you? Have you found anything that provides some relief?

REPLY
@johnbishop

@pamelaz, Here is list of teaching hospitals in Texas that may be a good place to seek help with your different symptoms - https://thotonline.org/our-members/

Which of your symptoms is most bothersome for you? Have you found anything that provides some relief?

Jump to this post

I’m taking 60 mgs of Cymbalta and 100 mgs of Gabapentin 3times a day. The medicine makes me walk weird and my eyes roll around. I’m, also, taking Quetiapine. I have Epilepsy I take Keppra 1000mgs and 1 mg of clonazepam 2 times a day. The Gabapentin doesn’t see m to be working as I am having jerking with my leg going up and down and side to side.

I, also, have GERD

REPLY
@johnbishop

@pamelaz, Here is list of teaching hospitals in Texas that may be a good place to seek help with your different symptoms - https://thotonline.org/our-members/

Which of your symptoms is most bothersome for you? Have you found anything that provides some relief?

Jump to this post

The burning, tingling, electric shock that won’t stop.

REPLY
@pamelaz

The burning, tingling, electric shock that won’t stop.

Jump to this post

Now the side effect of the Gabapentin

REPLY
@dwf75

I have had chemo induced neuropathy in both feet, finger tips, and left leg from the knee down since 2020 when I was diagnosed with ovarian cancer. Nobody at the hospital prepared me for neuropathy following my first chemo so I had nothing for the pain. The pain was so bad it was the closest I came to wanting to kill myself. I was prescribed Lyrica (can't do gabapentin) which helped tremendously during and after chemo. Off the Lyrica for nearly 2 years and now intermittent shooting pain is starting up again. Tried Lyrica recently but had to go off it because of dizziness. In addition to neuropathy, I have constant back pain (5 surgeries), have hypothyroidism, and very recently was diagnosed as pre-diabetic. My PT gave me the name of a neurologist for the neuropathy who I just recently saw. She ordered a battery of blood tests and to my surprise I learned I'm pre-diabetic. Thankfully my A1C is at the very bottom of the range. After talking with my older brother, I'm treating that through diet and exercise. My B12 came back normal, but was low. The neurologist told me B12 can have an affect on neuropathy as well as other things. I will start taking a B12 vitamin starting tomorrow. I'm considering replacing my PCP who I've been seeing for many years. My mother died from diabetes and my older brother is pre-diabetic. All of this is in my family history but she never once did an A1C blood test and I'm soon to be 76. As for the neuropathy, I've learned chemo, diabetes, and thyroid disease are all causes. I feel like I only need my PCP these days to write scripts or verify or deny what I already know. Sometimes I feel like I'm the doctor!

Jump to this post

I can’t do Lyrica. Make neuropathy worse and lights burn worse. Just like Tylenol.

REPLY
@seniordon09

I just read your post about neuropathy pain and I also would like you to send me information on what helps !
Thank You,
Donald Goss

Jump to this post

Can you send the information to me?

REPLY
Please sign in or register to post a reply.