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.

@SusanEllen66

@rozmuhr sounds like what I have, Occipital Neuralgia.

I have problems with scalp, jaw, teeth, ear pain. I also have headaches and sometimes eye pain.
There are ways to treat this through physical therapy. It is caused by a misalignment of your neck and skull.
I changed my pillow, and do exercises that stretch and strengthen my neck muscles.

Susan

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I just saw a young girl on the news talking about the occipital neuralgia foundation. She has had this condition for ten years after incurring a concussion. Look into the foundation.

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I am prediabetic. Got 15 fractures in left foot and a screw. Got gangrene in big toe right foot had to have it amputated. Most pain is in right foot. They just tried a tens unit on me. I could not feel the electrical jolts even with it turned all the way up on my lower leg. above the knee I fill it at 2 or 3 bars.

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I was recently diagnosed with PN, after having a change in gait. This was totally new to me, out of left field. My Neurologist did blood tests and found I was high in B6 as well as an MRI of cervical spine which showed some degeneration but not enough to cause the gait changes. I stopped taking B6 about 2 weeks ago and it seems like symptoms are worsening. Wondering if anyone has had this experience and did it improve over time? Many thanks for any insights.

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@paul14

I was recently diagnosed with PN, after having a change in gait. This was totally new to me, out of left field. My Neurologist did blood tests and found I was high in B6 as well as an MRI of cervical spine which showed some degeneration but not enough to cause the gait changes. I stopped taking B6 about 2 weeks ago and it seems like symptoms are worsening. Wondering if anyone has had this experience and did it improve over time? Many thanks for any insights.

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Hi @paul14, Welcome to Connect. Sorry to hear that you have joined the PN club. You are not alone, there are a lot of us with varying degrees of peripheral neuropathy and other varieties and conditions. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. There are a couple of other discussions on vitamin B6 that you might want to view.
--- Body making too much Vitamin B6: https://connect.mayoclinic.org/discussion/body-making-too-much-vitamin-b6/
--- B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

Did your neurologist or doctor suggest any gait training exercises or therapy to see if that might help?

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@johnbishop

Hi @paul14, Welcome to Connect. Sorry to hear that you have joined the PN club. You are not alone, there are a lot of us with varying degrees of peripheral neuropathy and other varieties and conditions. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. There are a couple of other discussions on vitamin B6 that you might want to view.
--- Body making too much Vitamin B6: https://connect.mayoclinic.org/discussion/body-making-too-much-vitamin-b6/
--- B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

Did your neurologist or doctor suggest any gait training exercises or therapy to see if that might help?

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Hi John
Thanks for the links, I’ll read all of them. I am scheduled for PT in July and am currently doing daily PN exercises I found on YouTube. I have looked for gait training but haven’t found anything of substance yet. Any other suggestions appreciated.

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@paul14

Hi John
Thanks for the links, I’ll read all of them. I am scheduled for PT in July and am currently doing daily PN exercises I found on YouTube. I have looked for gait training but haven’t found anything of substance yet. Any other suggestions appreciated.

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Have you seen these exercises?
Gait Training Exercises In Physical Therapy: https://www.verywellhealth.com/gait-training-in-physical-therapy-5069884

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I have neuropathy from a spinal cord injury. I do have in three left hand fingers, but just numb no real tingling. My feet, yes. Numbness, tingling, cold sensation, and pain. I use an arnica montana gel and a mon-THC CBD lotion. I also take kratom and Tylenol. Not to mention the proper vits and minerals. Basically the shotgun effect. I do experience most relief. Wether what I do works or is a placebo, I feel better. Sometimes I push too much and that sucks. I’ve learned to appreciate/deal with the issue and move forward. This could be from my many years as a Judo player, over 27 yrs military (Ret), or both. I find keeping positive (hard at times) is the best. I’m not able to do a complete workout anymore (no running or repetitive vertical off ground motions), do what I can. Also, pray for strength and guidance. There are ups and downs. The key is not to surrender or give up.

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@artscaping

@user_ch98d0b5c - Well, I fit that condition...idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.

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Hi, I am in this same boat with non diabetic neuropathy and no one has found an answer for me as to the cause. So it sounds like medication might be the only answer for managing the pain. It certainly hinders my normal activities such as yard work etc. I am on Gabepenten which helps a bit, but I resist going on something stronger .
I would really appreciate it if you could share publicly what works for you. Thanks.

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@jeanm1

Hi, I am in this same boat with non diabetic neuropathy and no one has found an answer for me as to the cause. So it sounds like medication might be the only answer for managing the pain. It certainly hinders my normal activities such as yard work etc. I am on Gabepenten which helps a bit, but I resist going on something stronger .
I would really appreciate it if you could share publicly what works for you. Thanks.

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I too am suffering from nondiabetic neuropathy. NO ANSWER anywhere just physicians pushing all sorts of drugs with huge side effects especially if you are older like me (82years young) I have been everywhere done everything and spent a fortune with false hopes. Tons of tries with physical therapy that made me worse not better as I have age degenerative meniscus tears and osteoarthritis in the knees not operable as I do not have bone on bone. So I am now being approved for Medical Marijuana. This road will take a long time to get the proper strain and dose level at a great cost. It is not a cure but if the level eventually becomes correct it will reduce the pain level. That is all I can ask for. There is a new therapy hopefully coming on the market after more trials it is low laser therapy. It is an interesting read. So for the younger people on this site, there is hope on the horizon. GOd BLess you all
Vicki

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