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?

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

@johnbishop

Thanks, If it were me, I might be asking him why does he think it's neuropathy. Symptoms can probably be from many things. Here's some more information that might be helpful for you if you need to ask more questions if it doesn't get any better - https://neuropathycommons.org/neuropathy/tests-diagnosing-small-fiber-polyneuropathy

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Thank you John, I'll call my doctor and inquire on these tests

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@mcgatt

I use Neuropathy oil. Myrhh and frankincense. Works well

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Thank you for this post. My husband has found these topical drops helpful too.

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@johnbishop

Thanks, If it were me, I might be asking him why does he think it's neuropathy. Symptoms can probably be from many things. Here's some more information that might be helpful for you if you need to ask more questions if it doesn't get any better - https://neuropathycommons.org/neuropathy/tests-diagnosing-small-fiber-polyneuropathy

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Hi John, I called me podiatrist today, his assistant mentioned I have symptomatic sensory peripheral neuropathy, and I was tested my first visit with what she called Filament sensory to toe pads and bottom of my feet.

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@alawildman

What Dr would let you take 3600 MGS of gabrapentin that concerns me ?

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Very concerning OMG Barb

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I became a diabetic in 1997, but was able to finally eliminate diabetes last year (in 2020). I was so happy when my doctor told me I was "no longer a diabetic, not even a pre-diabetic!!" Then, unexpectedly, a few months later, I came down with Chronic Kidney Disease, although my doctor missed that and didn't tell me until I was in Stage 2. And now
I am currently in Stage 3 of CKD. To make things worse, within that six month period (possibly due to stress),
I came down with CKD, Atrial Fibrillation, and Barrett's Esophagus (pre-cancerous cells in my esophagus) !!
Of course I was devastated, and wondered how in the world could this happen to me. I had been trying to eat as healthy as I could since defeating diabetes!!
I have spent a lot of time reading about these illnesses, and had read that even these things can all be reversed!
And since I got rid of diabetes, I thought I could eliminate these problems by just eating healthy, and following their
guidelines. I have tried to go by CKD eating guidelines, hoping to get better, but I still can't seem to make much progress. Is there anyone out there that can show me how to get healthy again?? Linda

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I forgot to mention that I had also developed Neuropathy in my toes/feet. I am searching for a cure for this also. Several years ago, a older guy mentioned that he had healed his Neuropathy by wearing magnetic insoles in his shoes. Is there a possibility that this could take care of it??

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@llmonfort

I forgot to mention that I had also developed Neuropathy in my toes/feet. I am searching for a cure for this also. Several years ago, a older guy mentioned that he had healed his Neuropathy by wearing magnetic insoles in his shoes. Is there a possibility that this could take care of it??

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Hello @llmonfort, Welcome to Connect. I can understand how you must feel after working hard on lifestyle changes and eliminating diabetes only to have other health conditions pop up. It's good that you are searching and trying to figure out what will help. I shared my neuropathy story in the Member Neuropathy Journey Stories discussion here - https://connect.mayoclinic.org/comment/310341/.

Here's some information I found from 2005 on magnetic insoles - "Magnetic shoe insoles did not effectively relieve foot pain among patients in a study, researchers report in the current issue of Mayo Clinic Proceedings. And the results indicate that patients who strongly believed in magnets had pain relief even if they were given false magnets to wear." --- Magnetic Insoles Do Not Provide Pain Relief, Mayo Clinic Study Reports: https://www.sciencedaily.com/releases/2005/09/050925152632.htm

Here are a few discussions you may find helpful:
-- Diet for diabetes and stage 4 CKD - very confusing: https://connect.mayoclinic.org/discussion/diet-for-diabetes-and-stage-4-ckd-very-confusing/
-- Barrett’s esophagus-friendly diet: https://connect.mayoclinic.org/discussion/be-friendly-diet/

You mentioned stress may be causing or possibly making things worse for you. You might be interested in participating in the following discussion -- Stress Management for Cancer: Free online course from Mayo: https://connect.mayoclinic.org/discussion/stress-management-for-cancer-free-online-course-from-mayo/

Do you mind sharing which of your symptoms concerns you the most?

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@alawildman

What Dr would let you take 3600 MGS of gabrapentin that concerns me ?

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@alawildman
Im my opinion a good doctor.
I have been told by more than one doctor that gabapentin is the type of drug for the most part that depends on your side effects. I never had any side effects at all from gabapentin even at 3600 mg a day however it didn’t help my seizures nor did it help my neuropathy. My brother on the other hand who also takes 3600 mg is helped tremendously by it. In my brothers case he was started out at the usual dose which did little or no good but as his dose was increased it became more & more effective.
I know of many people on the maximum dose or above who do very good on it.
I knew of a man who took 7000 mg of gabapentin per day however it’s been a long time and I don’t remember whether he stayed at that girls or if it was affective for him. He to had no side effects from it.
Gabapentin an Antiseizure medication has a better side effect profile than some other Anticonvulsants. 3,600 mg is the maximum dose but that doesn’t mean a physician can’t exceed that dose if the think it necessary. I took many seizure medicines at or above the maximum dose to try and control seizures but for 44 years none were effective.
Jake

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@alawildman

What Dr would let you take 3600 MGS of gabrapentin that concerns me ?

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I was taking that amount as well, it made my body numb to touch, but didn't relieve pain, I threw up for 3 weeks and lost 30 lbs, when they cut me back to 100mg a day. Total nightmare

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I had a lower back injury 2 years ago. Can that cause neuropathy ? I/ve had it for 5 months now , under toes, soles of feet, but some in the fingers too.

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