Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Yes. I had an EMG which showed some nerve damage in my feet. Dr. originally thought it was because I was prediabeteiv bury endocrinologist said that wasn’t the cause. Dr. Also thought the high amount of B vitamins in my daily vitamin but that is not it. Further testing has found a high complement protein that may have some answers but I need to do a 24hr urine and get a biopsy to complete the picture.

REPLY
@johnbishop

Hi @mach92driver and @marlk, Welcome to Connect. It's great to see that you have connected and shared what has helped you. There are a lot of great discussions in the Neuropathy Support Group. Here's a link to the list of discussions if you want to check them out - https://connect.mayoclinic.org/group/neuropathy/.

One of the best things you can do is learn as much as you can about your condition and what treatments are available the may provide some relief. Here are my two go to websites for learning more about neuropathy and research:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.

Have you done any research on your condition or treatments that might help?

Jump to this post

Have had neuropathy many years now and did a lot of research in the beginning. The gabepentin helped so that is what I've used. I was so thankful for something. I had lots of pain in my feet.

REPLY
@wascaly

I’m 73 and my problem is my feet - the numbness. I agree. It makes it extremely hard to walk. I’ve had 7 spine surgeries and one hip surgery when I fell because of my imbalance (getting out the shower on the hard bathroom tiles). Now I use a Rollator just to be able to walk, whereas before I only used a cane. The whole situation is just so depressing. I do have my faith in Jesus to lean on, plus going to the gym, lifting weights and doing an incumbent bike for cardiovascular exercise. Physical exercise helps me tremendously, as well as keeps my weight down. I, too, take Gabapentin, with very little (if any) relief.
I guess this is my cross to bear, but that doesn’t make it any easier.
I find it very interesting to note that I cannot find very many clinical studies on peripheral neuropathy. Has anyone else noticed that too?

Jump to this post

Try taking vitamin B12 injections (not pills). Vitamin B12 helps repair muscles and nerves.
My B12 levels were low normal, my neurologist had me taking B12 vitamin pills that didn't help. My primary care doctor recommended B12 injections, I take an injection every 1 to 3 weeks as needed. It doesn't make the pain go away, it makes it more tolerable, still have periods where the pain makes it difficult to walk. I feel my feet more with less sensation of walking on air. Unfortunately, I still fall down, my legs will buckle under me and I fall backwards. The falling may be related to my neuropathy, seizures, cardiac issues or all three.

I'm 72, sometimes feel 90 but still appreciate God letting me stay here a little longer.

REPLY
@asergio714

Yes. I had an EMG which showed some nerve damage in my feet. Dr. originally thought it was because I was prediabeteiv bury endocrinologist said that wasn’t the cause. Dr. Also thought the high amount of B vitamins in my daily vitamin but that is not it. Further testing has found a high complement protein that may have some answers but I need to do a 24hr urine and get a biopsy to complete the picture.

Jump to this post

It's interesting that your doctor thought it was vitamin B levels. My vitamin B levels were low normal, my neurologist had me taking B12 vitamins, didn't change my situation. My primary care doctor put me on vitamin B12 injections that provided some help with neuropathy.

My wife has been a type 1 diabetic 60 years, there are a few things you might consider doing if not done already: (1) have your kidneys checked. Most of my wife's doctors were concerned with protein "spilling" into her urine, it's sign of kidney disease, (2) check your A1C levels, that will show you just how close you are to being a diabetic and (3) have a sugar tolerance test to determine your body's ability to handle excess sugar.

REPLY
@tonyde

Try taking vitamin B12 injections (not pills). Vitamin B12 helps repair muscles and nerves.
My B12 levels were low normal, my neurologist had me taking B12 vitamin pills that didn't help. My primary care doctor recommended B12 injections, I take an injection every 1 to 3 weeks as needed. It doesn't make the pain go away, it makes it more tolerable, still have periods where the pain makes it difficult to walk. I feel my feet more with less sensation of walking on air. Unfortunately, I still fall down, my legs will buckle under me and I fall backwards. The falling may be related to my neuropathy, seizures, cardiac issues or all three.

I'm 72, sometimes feel 90 but still appreciate God letting me stay here a little longer.

Jump to this post

Thank you for that suggestion. I’ve heard that B12 is good for neuropathy. I believe I even gave it a try (the pills) but soon it fell by the wayside, since I didn’t notice any improvement.
I’ll certainly try the shots, tho. I have an appointment with my primary care doc come ng up soon, so I’ll certainly try the injection. She charges $25 (not sure if covered by my insurance), but if it gives me some relief, it’ll be worth it!

REPLY
@wascaly

Thank you for that suggestion. I’ve heard that B12 is good for neuropathy. I believe I even gave it a try (the pills) but soon it fell by the wayside, since I didn’t notice any improvement.
I’ll certainly try the shots, tho. I have an appointment with my primary care doc come ng up soon, so I’ll certainly try the injection. She charges $25 (not sure if covered by my insurance), but if it gives me some relief, it’ll be worth it!

Jump to this post

My shots are covered by Medicare, my doctor gave me first shot, I now take them myself You shoud get 3 or 4 shots every 2 weeks before you'll know if they work. It wasn't an instant "now I feel better" for me. Hope it works. Please let me know how it goes.

REPLY

I didn’t realize Medicare would cover them - this is so encouraging to me. I’ve been suffering from this horrible numbness (not pain, thanks to God) for many years, so very glad there might be light at the end of my tunnel!
Thank you so much!
However, I’m wondering why no doctor (and I’ve seen MANY) has ever suggest shots to me before….🤬

REPLY
@tonyde

It's interesting that your doctor thought it was vitamin B levels. My vitamin B levels were low normal, my neurologist had me taking B12 vitamins, didn't change my situation. My primary care doctor put me on vitamin B12 injections that provided some help with neuropathy.

My wife has been a type 1 diabetic 60 years, there are a few things you might consider doing if not done already: (1) have your kidneys checked. Most of my wife's doctors were concerned with protein "spilling" into her urine, it's sign of kidney disease, (2) check your A1C levels, that will show you just how close you are to being a diabetic and (3) have a sugar tolerance test to determine your body's ability to handle excess sugar.

Jump to this post

Kidneys are fine and A1C is normal now. It was only abnormal got a couple of tests thank God. Have been taking B12 for a long time, I think it was B6 that can cause neuropathy at high levels but I’m not completely sure. I will be 24 urine very soon .

REPLY
@wascaly

I’m 73 and my problem is my feet - the numbness. I agree. It makes it extremely hard to walk. I’ve had 7 spine surgeries and one hip surgery when I fell because of my imbalance (getting out the shower on the hard bathroom tiles). Now I use a Rollator just to be able to walk, whereas before I only used a cane. The whole situation is just so depressing. I do have my faith in Jesus to lean on, plus going to the gym, lifting weights and doing an incumbent bike for cardiovascular exercise. Physical exercise helps me tremendously, as well as keeps my weight down. I, too, take Gabapentin, with very little (if any) relief.
I guess this is my cross to bear, but that doesn’t make it any easier.
I find it very interesting to note that I cannot find very many clinical studies on peripheral neuropathy. Has anyone else noticed that too?

Jump to this post

Hello my name is Illa and I to trust God with all my heart and soul and I suffer from Peripheral Neuropathy very badly. It all came on me overnight and I have problems walking standing and my balance is off. But I am still able to walk and I truly thank God for that. I had no idea that excersise helped so much with it but thank you for that advice. I am 56 years of age and I am so grateful and blessed. I thank God for you sharing your story it has truly impacted my life open my eyes and made a difference. So again I thank you and will definitely keep you in my prayers.

REPLY
Please sign in or register to post a reply.