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.
Hi Galb
I too am experiencing non diabetic neuropathy in my intestines(slow gut) ,right shoulder and heart.
Like you I was a very fit person walking 10 miles plus rock climbing on weekends.
Pretty sure these are complications from my very low levels of potassium which resulted in a conns diagnosis.
My conns is settled now but I started with tingling and decreased ability to feel heat on my legs.I also had very low vit d levels,then osteoporosis diagnosed after scan.
Multiple checks but no diabetes.
I appreciate your frustrations ,it's awful having your life taken away from you!
Good morning. Thanks for filling me in. I have a couple more thoughts....(which is unusual in the morning). I understand the nerve conducting tests. However, the standard for SFN is the skin biopsy which is a 10-second test. However, it has to be sent off for analysis which then enables the neurologist to know what capacity you now have in the nerve cells. Mine was .09 which was quite low.
Good for you doing research on your own. I usually start with the Mayo Clinic site. Then I go to the following sites for additional information: https://www.foundationforpn.org/ https://neuropathycommons.org/
You may want to ask for some dietary help at this point. I gave up sugar (as best I can) coffee, and alcohol. Instead of a cocktail, I make a fruit/vegetable smoothie with my zero-sugar yogurt and some fruit crystals.
@roslyn, I noticed your expectation that a cure for neuropathy needs to be on someones priority list here in the USA. At this point, there is no cure. Nerve regeneration takes a long time and so far there has been no discovery of a "hurry up" button. What we do by sharing on Connect is find folks dealing with similar symptoms who have found mitigating solutions.
Please share the results of your research. There are thousands of folks who follow and read responses on Connect even though they, themselves, do not post. Your help is appreciated.
What was the "surgery of a neurologist" that you had done?
May you find comfort and ease.
Chris
I can throw in my experience .
I gave up sugar caffeine alcohol and empty carbs for 2 weeks ..I have regained some of my balance and I’m needing not as many pain killers but continuing with the same dose of Endep.
I haven’t had this condition for very long so I’m not certain that this improvement is because of a diet change or it’s just improving on its own. I assume the only way to tell would be to do a challenge diet eating all those foods again and monitor the results. I think this diet is worth a try though..not much joy in it but if it offers some relief it would be worth it
I can throw in my experience .
I gave up sugar caffeine alcohol and empty carbs for 2 weeks ..I have regained some of my balance and I’m needing not as many pain killers but continuing with the same dose of Endep.
I haven’t had this condition for very long so I’m not certain that this improvement is because of a diet change or it’s just improving on its own. I assume the only way to tell would be to do a challenge diet eating all those foods again and monitor the results. I think this diet is worth a try though..not much joy in it but if it offers some relief it would be worth it
I am sorry I did forget to mention that I am on a gluten free diet as well. I am coeliac 26 years. So I take it for granted but there has been suspicions about gluten being inflammatory for nerves. Good luck if you decide to try the No fun no joy no flavour diet.
Since my doctor said no medicine for neuropathy really works I just power through. My chemo is the cause of my neuropathy. No other medical issues except I am overweight from mobility issues brought by neuropathy in the feet. I used to have palsy in my hands but it is now down to fingertips tingling and sometimes a stabbing pain there. My feet are bad, but I have sturdy shoes that seem to help, and a cane or walker is necessary at times. All chemo caused, no diabetes.
Good evening @ernie21. As you must know by now, we are all different. Our reactions to health-driven decisions and treatments can result in our own unique responses. However, medical information suggests that in theory, cutting out sugar should decrease inflammation in the body. In my personal experience, any effort which relieves inflammation also gives me a reduction in discomfort.
Good evening @ernie21. As you must know by now, we are all different. Our reactions to health-driven decisions and treatments can result in our own unique responses. However, medical information suggests that in theory, cutting out sugar should decrease inflammation in the body. In my personal experience, any effort which relieves inflammation also gives me a reduction in discomfort.
Thanks to all who took time to respond. My case is not as severe as others have mentioned here. It is mostly a diminished feeling sensation (but not quite numb) in the balls of feet forward (toes - both top and bottom) but no pain to speak of. It started years ago with a feeling like there was a string tied around two middle toes of both feet and gradually progressed to this over 12 years.
My biggest question is whether this is inflammation contributed by sugar that can be eliminated or permanent nerve damage that will not recover even if sugar (inflammation) is eliminated.
Thanks again to all!
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Yes, is there a sugar connection?
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3 ReactionsHi Galb
I too am experiencing non diabetic neuropathy in my intestines(slow gut) ,right shoulder and heart.
Like you I was a very fit person walking 10 miles plus rock climbing on weekends.
Pretty sure these are complications from my very low levels of potassium which resulted in a conns diagnosis.
My conns is settled now but I started with tingling and decreased ability to feel heat on my legs.I also had very low vit d levels,then osteoporosis diagnosed after scan.
Multiple checks but no diabetes.
I appreciate your frustrations ,it's awful having your life taken away from you!
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2 ReactionsI completely understand.
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2 ReactionsChris,
You still did not answer if giving up sugar was worth it/helpful in relieving any pain or discomfort.
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I can throw in my experience .
I gave up sugar caffeine alcohol and empty carbs for 2 weeks ..I have regained some of my balance and I’m needing not as many pain killers but continuing with the same dose of Endep.
I haven’t had this condition for very long so I’m not certain that this improvement is because of a diet change or it’s just improving on its own. I assume the only way to tell would be to do a challenge diet eating all those foods again and monitor the results. I think this diet is worth a try though..not much joy in it but if it offers some relief it would be worth it
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7 ReactionsThanks very much for your input!
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2 ReactionsI am sorry I did forget to mention that I am on a gluten free diet as well. I am coeliac 26 years. So I take it for granted but there has been suspicions about gluten being inflammatory for nerves. Good luck if you decide to try the No fun no joy no flavour diet.
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Helpful -
Hug
2 ReactionsSince my doctor said no medicine for neuropathy really works I just power through. My chemo is the cause of my neuropathy. No other medical issues except I am overweight from mobility issues brought by neuropathy in the feet. I used to have palsy in my hands but it is now down to fingertips tingling and sometimes a stabbing pain there. My feet are bad, but I have sturdy shoes that seem to help, and a cane or walker is necessary at times. All chemo caused, no diabetes.
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3 ReactionsGood evening @ernie21. As you must know by now, we are all different. Our reactions to health-driven decisions and treatments can result in our own unique responses. However, medical information suggests that in theory, cutting out sugar should decrease inflammation in the body. In my personal experience, any effort which relieves inflammation also gives me a reduction in discomfort.
Chris
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10 ReactionsThanks to all who took time to respond. My case is not as severe as others have mentioned here. It is mostly a diminished feeling sensation (but not quite numb) in the balls of feet forward (toes - both top and bottom) but no pain to speak of. It started years ago with a feeling like there was a string tied around two middle toes of both feet and gradually progressed to this over 12 years.
My biggest question is whether this is inflammation contributed by sugar that can be eliminated or permanent nerve damage that will not recover even if sugar (inflammation) is eliminated.
Thanks again to all!
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Like -
Helpful -
Hug
5 Reactions