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.

My neuropathy is autoimmune due to lupus, Hashimotos (autoimmune hypothyroidism) connective tissue disease , and Sjogrens.

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@jancnkc

I have idiopathic peripheral neuropathy. It started approximately 5 yrs ago. It is not hereditary, I have not had any injuries or damaged my feet in any way. My feet hurt 24/7 with numbness, feet on fire, feet feel frozen, shooting shock pains, etc. My neurologist has prescribed gabapentin and Tramadol. The medicine does help decrease the severity of my pain by 30-40%. The symptoms are now affecting my ability to walk, keep my balance, and stand for any period of time.
I’ve tried everything - vitamins, red light therapy, oils, creams, etc. This neuropathy has severely impacted my daily activities and my life.
I’ve read these comments but does anyone have something that will decrease the pain?

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Try regrowing all the missing nerves protection layers of MYELIN. Vitamin B12 grows myelin. All seniors are b12 deficient because of alcohol, poor diet and reduced stomach acid. Try taking B12 METHYL COBALAMIN and see what happens. Good luck.

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@japanjim

Thank you. Please let me know. I will see my neurologist for a routine exam on Wednesday when you are getting your Softwave treatment. I plan to just write down a few supplements and methods and ask him if any of those can help. I hope it helps you.

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The softwave treatment was pretty simple. I do plan on using it for neuropathy for my feet and legs, but.....i had a more urgent problem i was dealing with, so i used my visit to concentrate on my left side of hip thru shoulders, which went out of whack a while ago. When the Dr., ran the device over my back, and hit the lift side of back, it was very tender, so he found the area giving me grief. When i told him my problem, he did say sciatica.
He said in aprx 4 hrs, i would probably feel a little more discomfort, and not to ice or apply heat, and just rest. But, that was yesterday, and as of now, thurs , I did not feel any discomfort. He is going to call today for a follow up, (wow! I found a Dr, that actually does that ). I told him I don't think i will be able to give him any results, as i have been able to walk and do my daily stuff just fine. BUT......i will be able to tell the difference, when he does further treatments AND when the left back area is no longer tender. so, I will see him again Monday. After my back area is under control, then i will have him work on my tight feeling feet, and my weak legs. Remember, many Dr/specialsts who do Not work with alternate health, may just down play any of these non invasive, non drug treatments.......So it might be helpful to find a therepist, or alternative Dr., who actually works with patients using alternate therapies. Especially if a Dr., is recommending Surgery. Check other therapies out first. If they can not help you, then at least you tried the safer route. Only way you will personally know tho, is to try it. I will update you on treatments, but, it may be a few weeks before i get to using it for neuropathy. I do have my ultrasound device at home, which i had run over the bottom of my feet and around my ankles for 5 minutes each. Once a week. You are not supposed to use it too frequently. Only used it maybe 4 times, or so, might have started to help a little, but i quit since i am going to be doing the SoftWave tratments.

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@jamessaxo

Try regrowing all the missing nerves protection layers of MYELIN. Vitamin B12 grows myelin. All seniors are b12 deficient because of alcohol, poor diet and reduced stomach acid. Try taking B12 METHYL COBALAMIN and see what happens. Good luck.

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Is B12 the answer? I hope so. I have yet to receive a diagnosis but I am definitely not in the diabetic group. But all seniors are not B12 deficient. My diet has always been very balanced save for my sweet tooth (still not diabetic) but I have cut back on sugar due to its inflammatory nature. Also, have not touched alcohol for several years now. I am relatively new to this neuropathy so any proof that this B12 works would be wonderful. I definitely do not want to go on prescription drugs--which is what I think got me to the neuropathy scene.

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I have had either idiopathic or genetic peripheral neuropathy for about 30 years. I am now 80. I have (had) 5 cousins, 3 of which also have it without having diabetes. Most of the bottom of my feet are now completely numb which makes it hard to keep my balance. The nerves are constantly producing little shocks in my legs that are not painful; at least 100/minute. Depending upon which muscle the nerve activates, the shocks can make that muscle twitch. Most of the shocks are just felt and don't cause movement. As soon as I move my leg, the shocks stop but return within 10 seconds. I can ignore the pain and if I keep my mind busy. The burning and tingling is now all over my body except for the back of my head. My biggest problem is with balance.

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I can relate to exactly what you are saying. I’m 65 and have ignored the symptoms because I’m dealing with numbness that goes from my feet up to the mid point of my thighs. I mistakenly thought it was due to my lower back spinal stenosis. I do deal with a lot of pain associated with neuropathy, some of which goes to behind my buttocks, which makes sitting very difficult. I’ve been on 150mg of Lyrica twice a day which has helped a lot with the tingling and stabbing pain. I’ve dealt with with this for so long, that the Lyrica has been life changing. Hoping you do well

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I have had tingling (paresthesia) over most of my body for nearly 2 years. About 8 months ago I started to have noticeable neuropathy in my feet. I have had many test since the onset including CT scans which found a neuroendocrine tumor on my pancreas, which was removed, unfortunately it had nothing to do with my symptoms. In all the testing my B6 was never tested until March of this year. It was nearly twice the high level. I stopped my supplements the day I found out. I looked into this and found that the symptoms of B6 toxicity were very similar to what I have been experiencing. Testing June 18 showed bilateral poly neuropathy of my feet/legs. There is no test to prove that B6 toxicity is the cause and unfortunately it can be many months until I will be able to see an improvement, if it is B6 toxicity. If you have taken or are taking B6 supplements or are eating foods (breakfast cereals and others that are enriched with B6) get a B6 test. My magnesium supplement had more than 3 time the B6 of my B Vitamin Complex.

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@arcuri24

Is B12 the answer? I hope so. I have yet to receive a diagnosis but I am definitely not in the diabetic group. But all seniors are not B12 deficient. My diet has always been very balanced save for my sweet tooth (still not diabetic) but I have cut back on sugar due to its inflammatory nature. Also, have not touched alcohol for several years now. I am relatively new to this neuropathy so any proof that this B12 works would be wonderful. I definitely do not want to go on prescription drugs--which is what I think got me to the neuropathy scene.

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All seniors are B12 deficient because of 30% less stomach acid. Acid removes B12 from animal proteins.

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@lhr

I have had either idiopathic or genetic peripheral neuropathy for about 30 years. I am now 80. I have (had) 5 cousins, 3 of which also have it without having diabetes. Most of the bottom of my feet are now completely numb which makes it hard to keep my balance. The nerves are constantly producing little shocks in my legs that are not painful; at least 100/minute. Depending upon which muscle the nerve activates, the shocks can make that muscle twitch. Most of the shocks are just felt and don't cause movement. As soon as I move my leg, the shocks stop but return within 10 seconds. I can ignore the pain and if I keep my mind busy. The burning and tingling is now all over my body except for the back of my head. My biggest problem is with balance.

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My peripheral neuropathy is cause unknown.
It’s either genetic or idiopathic like yours.
I’m dealing with this since I was 60 and now im 63.
Been to many neurologists over the years with no relief.
Been on all the drugs and IV infusions like IVIG and nothing has helped me.
Those shocks that I would get make me yell out in pain, and my poor dog would run into another room.
I would get them in different areas of my legs and feet.
Sometimes it would feel like someone put my toe in a vice.
No one knows what’s like until they experience it themself.
What’s been helping me lately is Lyrica 50 mg 3 times a day.
Seems to definitely cut down those stabbing pains I was getting.
My feet and legs are still numb and I still have pins and needles,but they’re more manageable.
I’m starting Rituxan infusions at my neurologist in Sept.
He said if I’ve tried ABand C,then we have to go Rituxan.
Wouldn’t cover the med in Florida, where I was living.

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@harley22

My peripheral neuropathy is cause unknown.
It’s either genetic or idiopathic like yours.
I’m dealing with this since I was 60 and now im 63.
Been to many neurologists over the years with no relief.
Been on all the drugs and IV infusions like IVIG and nothing has helped me.
Those shocks that I would get make me yell out in pain, and my poor dog would run into another room.
I would get them in different areas of my legs and feet.
Sometimes it would feel like someone put my toe in a vice.
No one knows what’s like until they experience it themself.
What’s been helping me lately is Lyrica 50 mg 3 times a day.
Seems to definitely cut down those stabbing pains I was getting.
My feet and legs are still numb and I still have pins and needles,but they’re more manageable.
I’m starting Rituxan infusions at my neurologist in Sept.
He said if I’ve tried ABand C,then we have to go Rituxan.
Wouldn’t cover the med in Florida, where I was living.

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I titrated up to 150mg 2 times a day with Lyrica and it has changed the quality of my life like I never thought was possible! My life was miserable, I’m also a chronic pain patient, so the last thing I needed was nerve pain from neuropathy!!
Ask your Dr if he thinks you could increase your dose. Next level would be 75mg then 100mg then 150mg so you have room to increase slowly.

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