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Non-diabetic neuropathy
Before I tell my story, let me state that I was a daily wine drinker for several years. My neuropathy started in my feet in 2017. It did not progress beyond my feet for several years. I stopped drinking in 2023, and at that point, my neuropathy was still confined to my feet. My doctor said that alcohol cessation should stop the progression of the neuropathy. I also started on a weight loss drug at that time. I weighed 157 lbs and I am 5’2”. The medicine was a success. I lost 54 lbs in five months, but also lost a large amount of muscle. I continued on the medication on the advice of my doctor. She said I would need to stay on the meds in order to maintain weight loss. Long story short, I was not hungry and from March, 2023 until February, 2024, I ate nothing but fruit, popcorn and salads. I ate very little protein during that year. Anyway, about six weeks after starting the medication, I noticed my knees felt weak. I spoke to my GP about it, and she said it was not associated with the medication. However, I became weaker and my neuropathy went into hyperdrive. I finally took myself off the medication in February, 2024, started eating a normal diet. I was able to see a neurologist at Vanderbilt and she said my neuropathy was probably caused by several factors, one being alcohol but also rapid weight loss, nutritional deficiencies and possibly idiopathic. That was in October. She also said my neuropathy should slow or cease progression with the modifications I made. However, my neuropathy is getting worse. I now have numbness all the way up my thighs, and, in the last two months, numbness in my rear. I am also developing a twitch on the left side of my face. I feel so discouraged and alone. It feels good to have a group of people that understand.
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I received several different opinions about the numbness in my feet. I had twitching too at one time. Still not sure if it was Vitamin B12 deficiency, post covid syndrome, high blood sugar, rapid reduction in blood sugar, or something else. The good news is that it’s improved significantly since starting supplement and managing diabetes quite well.
Did you get advice from a nutritionist so you specifically address any nutritional needs? Are you taking supplements or know what your B12 and D levels are?
I hope they can figure out the best way to help you. That sensation in the feet can be very disconcerting. Hope it improves.
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4 ReactionsHave they considered your spine? Do you have any back pain? Whenever a Doctor utters idiopathic, I want to call them lazy. Don’t give up, and never stop getting protein. What good is weight loss if you lose all of your muscle and can no longer enjoy your life? Doctors know very little about the central nervous system whether they will admit it or not. You may just have compressed nerves somewhere. Good luck and keep fighting and looking for answers.
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5 ReactionsGood Morning,
I am non-diabetic as well. I tried a strict vegetarian diet for a couple months for my arteries, it was a disaster, I was unable to sleep for days, no matter how tired/exercised I was. My PCP recommended to me "The Wahls Protocol" ever since I am trying to stick to keto as much as possible plus some intermediate fasting intermittent. I am waiting for the cure in the meantime lots and lots exercise, keto and fasting. Don't give up, God bless.
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5 ReactionsJust compressed nerves? That is a huge thing. Back surgery? Or do you suggest something else for compressed nerves?
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1 ReactionThank you for sharing your story—it takes courage to open up about such a challenging journey. It sounds like you've been through so much, and I can only imagine how frustrating and discouraging this has been for you. It’s good that you’ve seen a neurologist and made significant lifestyle changes, but it’s disheartening to hear that your symptoms are still progressing.
Have you been able to explore physical therapy or nutritional counseling to help with rebuilding muscle and addressing any lingering deficiencies? Sometimes working with a multidisciplinary team can provide more insights or options. Also, it might help to reach out to a neuropathy support group or look into specialists who focus on non-diabetic neuropathy—having a network of people who truly understand what you’re going through can make a huge difference.
You’re definitely not alone in this, and I hope you can find some relief soon. Sending you strength and wishing you the best on your journey!
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9 ReactionsI feel for you and the position you have found yourself in…I am a non diabetic who is experiencing neuropathy in my fingers and feet after starting chemotherapy …am trying to learn all I can while in the beginning stages hoping to avoid it taking over and negatively affecting my future quality of life…my dr. advised starting alpha lipoid acid 600mg X 2…and while it simmered down right away…it did not go away…next chemo in 1 week and fearing permanent nerve damage…
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4 ReactionsMy Neuropathy is non dia as well. Hasd a vascular test (ordered by my Cardiologist..not Neuroigist). Had several back epidurals...I have also been diagnosed with severe stenosis L4,L5.
Just after my Prostatectomy in 2015.I started having the foot numbness then hands over the years...No one wants to link it to that..but that's what I believe.
I just want one who understands and has options...Pennsylvanian.
By the way I spent thousands and any thing that said would help...no luck.
Thanks for reading
God Bless!
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4 ReactionsWelcome @gglenda, Connect is a great place to learn what others with similar symptoms and conditions have found helpful. You might find the search function of Connect helpful for learning what helps from other members. Here's a search using "chemo induced neuropathy what helps" - https://connect.mayoclinic.org/search/?search=chemo+induced+neuropathy+what+helps
@chrisbomstad asked about ice mittens and socks to help prevent/minimize neuropathy in another discussion here - Do ice mittens/socks help prevent Neuropathy from chemo?: https://connect.mayoclinic.org/discussion/do-ice-mittenssocks-help-prevent-neuropathy-from-chemo/
A few months ago I had a reaction to omnipaq injections for a ct scan after having Kenalog 40 epidural injections. I developed serious peripheral edema in my lower legs, ankles and feet. Diuretics helped a bit but since the problem was not vascular but neurologic cellulitis was considered and I had antibiotics which helped one leg a bit I learned from an internet video about edema treated with pineapple juice and coconut milk. I have been enjoying twice a day 8 oz of pineapple juice with 8 oz coconut milk and the edema is going away to my great relief. It is also very tasty but has about 150 calories per glass so I have to cut out some of the starches in my diet.
I was diagnosed with idiopathic axonal polyneuropathy (EMG) and spinal stenosis (MRI). I did have successful spinal stenosis in 2004, but now it came back. My buttocks hurt all the time when I sit on a chair, on a sofa, in the car, or lay in bed. However, my doctors are very careful to identify the stenosis as the cause of my neuropathy. The neuropathy is mostly in my feet and I luckily can still run with proper management (insoles, pain patches). Recently, I been experiencing more and more tingling in my legs. My gut feeling is that the stenosis is involved, but I don’t really know where to go from here. Back surgery brings its own risks.
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