Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@elderellen
Hello Ellen,
My Neuropathy started because of seizure medications. It initially was in the bottoms of my feet and has progressed past my waist. The good news in my case is after 30 or more years the horrendous pain, stinging, burning, tingling & all the various different sensations that once impeded my walking and prevented life from being enjoyable are gone. Those sensations have been replaced with numbness. The numbness causes it’s own problems however is in my opinion much better than the various pains I once endured.
I believe @johnbishop also now has numbness. Do you know what type of neuropathy you have? There are over100 different types, some of them treatable sometimes successfully if the neuropathy was caused by a vitamin deficiency, alcohol, sometimes if blood sugar levels are controlled in Diabetic Neuropathy or perhaps a medication induced Neuropathy. Unfortunately when my medication changed it didn’t help me. Unfortunately these treatments aren’t always successful. Some people find relief with Neurontin/Gabapentin others do not. My brother takes the maximum dose of 3,600 mg a day and finds some relief. I also took 3,600 mg a day and found no relieve for my Neuropathy or for my seizures. Neurontin/Gabapentin is an
Anti-convulsant medication. Others use creams, vitamins, minerals, etc.
I hope you find relief for your symptoms wishing 🙏 you the best of luck,
Jake

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@elderellen

Hi I think that behind my toes in my feet, there is no feeling? I was told by my PCP that as one adds years to ones life this happens to some folks, my feet are a long ways from my heart, so as individuals age sensations in the feet and toes can be affected, has any one else had this happen????

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Hi @elderellen, welcome to the Neuropathy group on Mayo Clinic Connect. You'll notice that I moved your message to this introduction discussion where many members like you have introduced themselves, for example @jeffrapp @steeldove @suzylulu @helennicola @jimhd @vik and so many more. Click VIEW & REPLY in the email to see the entire discussion and to scroll through past posts.

Ellen, you mention that you have numbness behind your toes. Do you also have pain? Have you been diagnosed with neuropathy?

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Is there any information on stem cell treatment for neuropathy?

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@rich35

Is there any information on stem cell treatment for neuropathy?

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Hello @rich35, Welcome to Mayo Clinic Connect. There are a couple of discussion on stem cell therapy which you may want to follow. As far as I know, there have been no successful stem cell treatments for neuropathy.

– Stem Cell Therapy for Neuropathy: https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/
– Mesynchymal Stem Cells to treat Neuropathy: https://connect.mayoclinic.org/discussion/mesynchymal-stem-cells-to-treat-neuropathy/

Have you been diagnosed with a specific type of neuropathy?

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@jesfactsmon

@avmcbellar
Hi Toni, nice to see a post from you!
Yes, Linda would agree with you that the tea does not eliminate her headaches. But it pretty consistently lessens the headache pain by about 1/3. It's enough to keep it from being horrible, which hers can sometimes be. I can definitely understand why your headaches can originate from your eyes. I hope your exercises eventually help you to eliminate your double vision. I admire you for working so assiduously to do these exercises. I have been reading the book about neuroplasticity. Tremendously interesting subject! Best, Hank

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Hi Hank and Linda @jesfactsmon. I have been trying different experiments and have decided to make changes. First of all, with my headache, I break out 2 “ice tea cubes” in little water to sip on when I feel the headache coming on. The tea seems to stop it all together. I don’t wait anymore for the headache to become full blown.
I thought about the ALA and the burning in my stomach. I decided the benefits were not worth the misery of the burning because it would linger all day. The changes of lowering the dosage and taking the acetyl L Carnitine only allowed an occasional relief for a day. I did not experience any additonal energy with the acetyl L Carnitine so I stopped both. It has been 2 weeks now without the supplements and I feel better not having the burning in my stomach.
Additionally, yesterday I ended my eye exercises since the motion sickness had gotten worse. A lack of balance and increased motion sickness makes doing activities very difficult. I can tolerate less endurance. I still have strength in my arms and legs. I just need the motion sickness to go away so I can build on balance. I believe exercises or neuroplasticity will help. I see that I do better with practice. I believe the brain learns because I started out in a wheelchair and after practicing I am now ambulatory. It is not for everyone because it does takes time, repetition, and discipline. Stay well! Hope you are both doing good today. Toni

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@avmcbellar

Hi Hank and Linda @jesfactsmon. I have been trying different experiments and have decided to make changes. First of all, with my headache, I break out 2 “ice tea cubes” in little water to sip on when I feel the headache coming on. The tea seems to stop it all together. I don’t wait anymore for the headache to become full blown.
I thought about the ALA and the burning in my stomach. I decided the benefits were not worth the misery of the burning because it would linger all day. The changes of lowering the dosage and taking the acetyl L Carnitine only allowed an occasional relief for a day. I did not experience any additonal energy with the acetyl L Carnitine so I stopped both. It has been 2 weeks now without the supplements and I feel better not having the burning in my stomach.
Additionally, yesterday I ended my eye exercises since the motion sickness had gotten worse. A lack of balance and increased motion sickness makes doing activities very difficult. I can tolerate less endurance. I still have strength in my arms and legs. I just need the motion sickness to go away so I can build on balance. I believe exercises or neuroplasticity will help. I see that I do better with practice. I believe the brain learns because I started out in a wheelchair and after practicing I am now ambulatory. It is not for everyone because it does takes time, repetition, and discipline. Stay well! Hope you are both doing good today. Toni

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@avmcbellar
Hey, this is good news Toni, I'm really glad you've gotten some benefit from the tea. Thanks for telling us. As you know it has helped Linda a lot. Interestingly she had a headache yesterday but it was a different kind of headache than usual. And nothing helped, not the tea, not the Clear Headache pills she takes sometimes. It was a bad one!

Sorry about the ALA effect. And not to worry too much, I don't think acetyl l carnitine helps everyone. It helps your mitochondria process fat for fuel. I find it has an effect for me that I can notice. But some people need boosts for certain things mitochondria-wise and some do not, or they might need something that performs a different function for the mitos. Linda takes a super Co Q10 (brand name Mito-q). She swears by its effect on her. I tried it and did not notice anything. So, since it's pretty expensive I stopped it and she is still doing it.

I must be forgetting what you said earlier about the eye exercises. I thought the eye exercises WERE the neuroplasticity exercises. So since you say you are stopping the eye exercises but the neuroplasticity exercises will still help, what are the neuroplasticity exercises exactly?

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Hank and Linda, good to hear from you. I am grateful the tea is working better for me. I am so sorry it didn’t help Linda. I know how miserable a bad headache can feel. I also sipped on it on a couple different days to fool my brain into thinking it will only get the tea every time I had a headache. I don’t know if this made any difference. This morning as soon as I got up the headache began. As it slowly intensified, I got my ice tea and within 30 minutes it was gone.
Hey, I am glad I tried the supplements to find out if they were for me, otherwise I would still be wondering.
No worries about the eye exercises. For me they acted as neuroplasticity. It was working for a while but the shifting of one eye image made the motion sickness worse. There are many different forms of exercises. It all depends on the goal. Through exercises, a person can retrain theIr brain to accomplish a task using a different pathway of nerves from what they are used to. As Barry had said, he completed the very same tasks using his left hand instead of his right or vice versa. He is teaching his brain different routes to perform the same tasks. In other words, we can get to the same point by traveling in different directions. I am thankful I am not paralyzed. No nerves were cut during the surgical repair of my ruptured cerebral AVM. I am hoping to diminish the motion sickness so I can focus on activities that will improve my balance. As it is now, I push myself to do things around the house no matter how I I feel as long as I don’t fall. I even volunteer my time helping high school students (online for now) with their school work. Wish you both well. Toni

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@avmcbellar

Hank and Linda, good to hear from you. I am grateful the tea is working better for me. I am so sorry it didn’t help Linda. I know how miserable a bad headache can feel. I also sipped on it on a couple different days to fool my brain into thinking it will only get the tea every time I had a headache. I don’t know if this made any difference. This morning as soon as I got up the headache began. As it slowly intensified, I got my ice tea and within 30 minutes it was gone.
Hey, I am glad I tried the supplements to find out if they were for me, otherwise I would still be wondering.
No worries about the eye exercises. For me they acted as neuroplasticity. It was working for a while but the shifting of one eye image made the motion sickness worse. There are many different forms of exercises. It all depends on the goal. Through exercises, a person can retrain theIr brain to accomplish a task using a different pathway of nerves from what they are used to. As Barry had said, he completed the very same tasks using his left hand instead of his right or vice versa. He is teaching his brain different routes to perform the same tasks. In other words, we can get to the same point by traveling in different directions. I am thankful I am not paralyzed. No nerves were cut during the surgical repair of my ruptured cerebral AVM. I am hoping to diminish the motion sickness so I can focus on activities that will improve my balance. As it is now, I push myself to do things around the house no matter how I I feel as long as I don’t fall. I even volunteer my time helping high school students (online for now) with their school work. Wish you both well. Toni

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What kind of tea are your using? I could not find a mention of a type of tea in any of the posts above. My husband has bad migraines and he takes a medicine that is a combination of caffeine, aspirin, and a narcotic – I forget the name. He has tried just caffeine tablets and they don't work for him so I am wondering if you are referring to a plain old caffienated tea or something special.

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@catharbert

What kind of tea are your using? I could not find a mention of a type of tea in any of the posts above. My husband has bad migraines and he takes a medicine that is a combination of caffeine, aspirin, and a narcotic – I forget the name. He has tried just caffeine tablets and they don't work for him so I am wondering if you are referring to a plain old caffienated tea or something special.

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@catcando
Hi Cathy, the tea is called Shifa Turmeric Headache Relief Tea, here is the link:
http://www.shifanaturals.com/headache-relief-tea
I just noticed it says it's currently unavailable from Amazon where I usually get ours. That happens occasionally, I think because it's a small company and they have a lag between batches. I've sometimes had to wait for a bit, 2 or 3 weeks sometimes to get it. Anyway, it has been helpful to my wife Linda who brews up a pot of it and keeps it in the fridge and just adds an ounce or two at a time to a cup of hot water and sips it. The pain relief seems to last longer the slower she takes it in. It seems to work for different types of headaches.

In case you are interested, here is how Linda makes hers: one half bag in a little over a quart of water on low boil for a couple hours on the stove.

Best, Hank

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@catharbert

What kind of tea are your using? I could not find a mention of a type of tea in any of the posts above. My husband has bad migraines and he takes a medicine that is a combination of caffeine, aspirin, and a narcotic – I forget the name. He has tried just caffeine tablets and they don't work for him so I am wondering if you are referring to a plain old caffienated tea or something special.

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Hi @catharbert I am using the Shifa tea as recommended by Hank @jesfactsmon. At the time, I got mine rather quickly through Amazon. I use 1/2 the bag to steep with 4 cups of water for 1 1/2 hours. The only difference I do is to freeze the tea in ice cube trays instead because I like it cold. I take 2 cubes at a time added to about 1/2 cup of cold water and drink that slowly when the headache starts. I first drank the tea when the headache was full blown. The headache remained but decreased in intensity. I found the tea totally eliminates my headache at the start. Hope this helps. Toni

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@avmcbellar

Hi @catharbert I am using the Shifa tea as recommended by Hank @jesfactsmon. At the time, I got mine rather quickly through Amazon. I use 1/2 the bag to steep with 4 cups of water for 1 1/2 hours. The only difference I do is to freeze the tea in ice cube trays instead because I like it cold. I take 2 cubes at a time added to about 1/2 cup of cold water and drink that slowly when the headache starts. I first drank the tea when the headache was full blown. The headache remained but decreased in intensity. I found the tea totally eliminates my headache at the start. Hope this helps. Toni

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Oh, by the way, @catharbert the cubes a large in size. Toni

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Hello @fuzzy1southernga, Thank you for the private message. You mentioned being diagnosed with progressive idiopathic sensory motor polyneuropathy in early June. You said you were overwhelmed with the amount of learning needed and you enjoyed that Connect was laid back and informative which made it easier. I thought I would respond to your private message so other members can share their experiences with you also and at the same time I wanted to suggest a few more discussions that you might find helpful.

– Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
– Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/
– Polyneuropathy: https://connect.mayoclinic.org/discussion/polyneuropathy/
– Does anyone find that a type of shoe helps your foot neuropathy?: https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/
– If the shoe fits, wear it!: https://connect.mayoclinic.org/discussion/if-the-shoe-fits-wear-it/

You mentioned being fit for orthotics made the seriousness of the disease real to you. Have you found anything that gives you any relief?

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@johnbishop

Hello @fuzzy1southernga, Thank you for the private message. You mentioned being diagnosed with progressive idiopathic sensory motor polyneuropathy in early June. You said you were overwhelmed with the amount of learning needed and you enjoyed that Connect was laid back and informative which made it easier. I thought I would respond to your private message so other members can share their experiences with you also and at the same time I wanted to suggest a few more discussions that you might find helpful.

– Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
– Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/
– Polyneuropathy: https://connect.mayoclinic.org/discussion/polyneuropathy/
– Does anyone find that a type of shoe helps your foot neuropathy?: https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/
– If the shoe fits, wear it!: https://connect.mayoclinic.org/discussion/if-the-shoe-fits-wear-it/

You mentioned being fit for orthotics made the seriousness of the disease real to you. Have you found anything that gives you any relief?

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In addition to neuropathy and severe allodynia on my right side including my foot, shoes and socks are extremely important. I also have drop foot and need to wear a leg brace sometimes if walking in rough terrain. I live in Wyoming of that helps clarify that statement at all.
I’ve switched to Brooks tennis shoes. I only buy one pair of needed at a time, replacing the larger pair for my brace only maybe every couple of years or so if that.

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Hello, I'm new to this group.. I'm struggling with neuropathy from an unknown source as of now. My family Dr told me it was from prediabetes but my A1C is usually around 5.7 but last check up was 5.3..
I first noticed a problem about 2 years ago when I was dressing up to go out and I could not walk in my heels. My toes felt broken. Then I started noticing the tingling and burning in my feet. I visited a podiatrist who took xray and examed my feet and he said perephial neuropathy.. He sent me to a neurologist who I didn't feel very confident in who did a study of tests and said the same thing.. Well it's been 2 years 3 doctors and I still don't agree with the diagnosis.. I've questioned my medical Dr several times about it and he says we may never know the cause. He put me on Gabapentin but I refused thev300 mg and I'm taking 100 mg 3times most days .. I'm worried about not knowing the cause and being able to treat it so it doesn't get worse. It has since started tingling in my left hand and sometimes my leg muscles feel weak.. My Dr said we are treating it.. I said how? He said with Gabapentin.. Is that REALLY treating it or just putting a bandaid on it? Idk.. I've had several major abdominal surgeries. My lower belly is still numb. I asked if this could be why I'm having problems. He said no..
It is causing me great anxiety not knowing.. Anyone have any suggestions for me?..

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@airpod

Hello, I'm new to this group.. I'm struggling with neuropathy from an unknown source as of now. My family Dr told me it was from prediabetes but my A1C is usually around 5.7 but last check up was 5.3..
I first noticed a problem about 2 years ago when I was dressing up to go out and I could not walk in my heels. My toes felt broken. Then I started noticing the tingling and burning in my feet. I visited a podiatrist who took xray and examed my feet and he said perephial neuropathy.. He sent me to a neurologist who I didn't feel very confident in who did a study of tests and said the same thing.. Well it's been 2 years 3 doctors and I still don't agree with the diagnosis.. I've questioned my medical Dr several times about it and he says we may never know the cause. He put me on Gabapentin but I refused thev300 mg and I'm taking 100 mg 3times most days .. I'm worried about not knowing the cause and being able to treat it so it doesn't get worse. It has since started tingling in my left hand and sometimes my leg muscles feel weak.. My Dr said we are treating it.. I said how? He said with Gabapentin.. Is that REALLY treating it or just putting a bandaid on it? Idk.. I've had several major abdominal surgeries. My lower belly is still numb. I asked if this could be why I'm having problems. He said no..
It is causing me great anxiety not knowing.. Anyone have any suggestions for me?..

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@airpod
The usual starting dose of gabapentin is 300 mg three times a day to its maximum dose of 3,600 mg. It is given in divided doses because its half-life is so short 5-7 hours. I don’t imagine you’re getting any relief of your symptoms on 300 mg a day, are you? Could it be your extremely sensitive to medication side effects? I took the max dose and it never helped my seizures or neuropathy. Mine was caused by seizure medication. My brother currently is taking the maximum dose and it helps him. His was caused by extensive surgery on both legs after being crushed and his femoral arteries severed.
Were the tests your Neurologist did a nerve conduction study and electromyogram (EMG)? Did your doctors do some bloodwork to check for vitamin deficiencies, Diabetes, Thyroid, etc?
Why do you doubt your doctor's diagnosis?
Like all Anti-convulsant Gabapentin may cause drowsiness but usually gets better if not goes away completely.
My neuropathy got better but it took a long time. My pain is gone but I have a great deal of numbness from my feet to my waist.
Take care,
Jake

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