There is a Facebook group with people who have Neuropathy . I have non diabetic neuropathy. There are many others. I will look to see if there is a group just for us.
Peripheral Success Stories is my favorite. Michael Wright started the group and he has had tremendous success with Low Dose Naltrexone.
I found a group. My membership is pending. I am 74. The Automatic Nervous System problems started in my teens. I have enjoyed my life despite the pain.
I am non-diabetic and have PN. About 6 yrs ago I was diagnosed. It is progressive and primarily affects my feet and starting in my hands. Very painful at times but I can still walk without a walker. I am a 72 year old man who still appreciates life very much.
I also have non diabetic progressive on I am 56 years of age just came on me overnight. I have no idea what could have possibly caused it , I suspect medication but I have no proof. Mayo Clinic said there is nothing they could do which left me devastated and depressed at first. It is extremely hard to walk, stand or just be stable at all on my feet but I still try. Yes I experience pain all the time as well but I stay prayerful that’s the only thing that has worked for me throughout this whole process is constant prayer. If you have any other questions that I can answer I have no problems with answering to the best of my ability. Have an amazing holiday and a beautiful and blessed week.
I'm Charlotte @charlie807, I'm a patient with neuropathy without diabetes. Mine was calll didn't check my nerves after surgery. I was in just as much pain after surgery plus my right leg was numb. I have pain in my feet sometimes sometimes my feet are so cold nothing warms them, then sometimes they are so hot I can't warm them. Only at night ! I cannot wear socks they feel as if my feet are on fire. I have one pair that's fine. Shoes I have one pair of shoes I can wear without feeling like my foot will break. I'm losing the feeling in both feet so balance is a big problem. My pain doctors tell me all research is being done for diabetics. This is very hard, very scary and the pain is awful and nothing really helps. Very depressing!
I am looking for help with figuring out my condition. Early in May I developed a mild tingling in my tongue, then my fingers started tingling. It has now progressed to my hands, feet, upper back, lips and nose. I also have a persistent pain below my right shoulder blade and a globus sensation in my throat and upper esophagus. I also have fatigue and feel off balance when I walk fast or try to run. I am not diabetic. My labs are all normal and have had a normal brain MRI. I am scheduled for a nerve conduction test in a week and am awaiting a referral to a neurologist which as a health care professional, I know can take months. I have always been an active person, logging 5-6 miles 3-4 times a week with a combination of jogging and walking and find it extremely frustrating that I am unable to continue this. I would appreciate any insight that anyone can provide. Thank you in advance.
I am looking for help with figuring out my condition. Early in May I developed a mild tingling in my tongue, then my fingers started tingling. It has now progressed to my hands, feet, upper back, lips and nose. I also have a persistent pain below my right shoulder blade and a globus sensation in my throat and upper esophagus. I also have fatigue and feel off balance when I walk fast or try to run. I am not diabetic. My labs are all normal and have had a normal brain MRI. I am scheduled for a nerve conduction test in a week and am awaiting a referral to a neurologist which as a health care professional, I know can take months. I have always been an active person, logging 5-6 miles 3-4 times a week with a combination of jogging and walking and find it extremely frustrating that I am unable to continue this. I would appreciate any insight that anyone can provide. Thank you in advance.
Hello @galb, Welcome to Connect. I'm hoping it doesn't take months to figure out what is causing your symptoms. Wondering if a vitamin deficiency might be a possible cause. Here's some information I found that sounds similar to what you are describing for symptoms.
"Vitamin B deficiency
You might also have a tingling sensation in the tongue and in your hands and feet. At the same time, you may feel very tired all the time, because both of these B vitamins are needed to make red blood cells and keep your nerves healthy. Low levels of these vitamins can lead to anemia."
--- Tingling Tongue: 9 Possible Causes - Healthline: https://www.healthline.com/health/tingling-tongue
Hello @galb, Welcome to Connect. I'm hoping it doesn't take months to figure out what is causing your symptoms. Wondering if a vitamin deficiency might be a possible cause. Here's some information I found that sounds similar to what you are describing for symptoms.
"Vitamin B deficiency
You might also have a tingling sensation in the tongue and in your hands and feet. At the same time, you may feel very tired all the time, because both of these B vitamins are needed to make red blood cells and keep your nerves healthy. Low levels of these vitamins can lead to anemia."
--- Tingling Tongue: 9 Possible Causes - Healthline: https://www.healthline.com/health/tingling-tongue
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Non length dependent small fiber neuropathy
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2 ReactionsThere is a Facebook group with people who have Neuropathy . I have non diabetic neuropathy. There are many others. I will look to see if there is a group just for us.
Peripheral Success Stories is my favorite. Michael Wright started the group and he has had tremendous success with Low Dose Naltrexone.
I found a group. My membership is pending. I am 74. The Automatic Nervous System problems started in my teens. I have enjoyed my life despite the pain.
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Hug
2 ReactionsI also have non diabetic progressive on I am 56 years of age just came on me overnight. I have no idea what could have possibly caused it , I suspect medication but I have no proof. Mayo Clinic said there is nothing they could do which left me devastated and depressed at first. It is extremely hard to walk, stand or just be stable at all on my feet but I still try. Yes I experience pain all the time as well but I stay prayerful that’s the only thing that has worked for me throughout this whole process is constant prayer. If you have any other questions that I can answer I have no problems with answering to the best of my ability. Have an amazing holiday and a beautiful and blessed week.
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4 ReactionsHi. That’s me. I got zinc poisoning from something that was supposed to be safe and it ruined my nerves and health.
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1 ReactionI so relate😓
I am looking for help with figuring out my condition. Early in May I developed a mild tingling in my tongue, then my fingers started tingling. It has now progressed to my hands, feet, upper back, lips and nose. I also have a persistent pain below my right shoulder blade and a globus sensation in my throat and upper esophagus. I also have fatigue and feel off balance when I walk fast or try to run. I am not diabetic. My labs are all normal and have had a normal brain MRI. I am scheduled for a nerve conduction test in a week and am awaiting a referral to a neurologist which as a health care professional, I know can take months. I have always been an active person, logging 5-6 miles 3-4 times a week with a combination of jogging and walking and find it extremely frustrating that I am unable to continue this. I would appreciate any insight that anyone can provide. Thank you in advance.
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Like -
Helpful -
Hug
1 ReactionHello @galb, Welcome to Connect. I'm hoping it doesn't take months to figure out what is causing your symptoms. Wondering if a vitamin deficiency might be a possible cause. Here's some information I found that sounds similar to what you are describing for symptoms.
"Vitamin B deficiency
You might also have a tingling sensation in the tongue and in your hands and feet. At the same time, you may feel very tired all the time, because both of these B vitamins are needed to make red blood cells and keep your nerves healthy. Low levels of these vitamins can lead to anemia."
--- Tingling Tongue: 9 Possible Causes - Healthline: https://www.healthline.com/health/tingling-tongue
Do you think this might be a possibility?
Vitamin B levels are within normal limits. I have a somewhat healthy diet and drink alcohol at MOST once a month. Thank you.
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1 ReactionChris,
You still did not answer if giving up sugar was worth it/helpful in relieving any pain or discomfort.
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