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?

@wobblyone

Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability to walk/balance. It has resulted in relatively recent (3- 5 years) and rapid muscle atrophy and my decline is becoming more rapid. My doctor has not been able to identify a cause. I am interested in support options to stay as active as possible (and hopefully outdoors as much as possible) over time. I have been active and outdoors all my life, biking, kayaking, camping, running, skiing, etc. So I am looking for information on increasing/maintain by current functionality/mobility, groups that provide outdoor activities for disabled folks, etc. Due to the speed of my decline, I also would like information on what progression of mobility/ function of life support I might expect – i.e. cane, special sports opportunities (i.e people missing a leg skiing), transitioning to life in a wheelchair, etc. Thanks, WobblyOne

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Hello @wobblyone, welcome to Mayo Connect. I'm glad you found us. This is a great place to ask questions and learn what others with similar health problems are doing for treatments.

Are you doing anything for treatments for your neuropathy?

I have small fiber peripheral neuropathy in both feet and legs and I have balance issues so I'm extra careful especially in the winter time. I've mastered the senior shuffle when it's icy out. Also, first thing in the morning I'm pretty careful until I've done some testing of the feet. I too have had muscle atrophy and loss of strength. I'm trying to use exercise with small weights to help the arm strength. I ride a recumbent exercise bike in the mornings first thing when I get up to help with the leg strength. I've heard others use water aerobics because it's easier on the joints. Physical therapy might be worth while to learn specific exercises to help with balance.

As to your question on what you might expect — I don't think it's the same for everyone as there are too many variables. You definitely have the right attitude to stay active and find activities that help and that you like. The Foundation for Peripheral Neuropathy has some good suggestions on their site:

Maintaining Balance:
https://www.foundationforpn.org/2017/08/04/maintaining-balance/

Maintaining a Healthy Lifestyle: (exercises and more…)
https://www.foundationforpn.org/living-well/lifestyle/

Hoping some of our other neuropathy members will join in and offer some suggestions for you.

John

Liked by steeldove

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Hello Have U taken MRI.? That only will show the blood circulation and small vessel problems. Take MRI Brain & Spine. Also take blood test with connected all tests.

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@wobblyone

Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability to walk/balance. It has resulted in relatively recent (3- 5 years) and rapid muscle atrophy and my decline is becoming more rapid. My doctor has not been able to identify a cause. I am interested in support options to stay as active as possible (and hopefully outdoors as much as possible) over time. I have been active and outdoors all my life, biking, kayaking, camping, running, skiing, etc. So I am looking for information on increasing/maintain by current functionality/mobility, groups that provide outdoor activities for disabled folks, etc. Due to the speed of my decline, I also would like information on what progression of mobility/ function of life support I might expect – i.e. cane, special sports opportunities (i.e people missing a leg skiing), transitioning to life in a wheelchair, etc. Thanks, WobblyOne

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wobblyone, take a look at Maine Adaptive Sports & Recreation maineadaptive.org

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I have ICD and l can't l that test. Is a CT scan of the brain ok? I have appointment 4-2. Please advise. Thank U

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@tonyagann

I have ICD and l can't l that test. Is a CT scan of the brain ok? I have appointment 4-2. Please advise. Thank U

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REDO YOUR MESSAGE;IT IS UNCLEAR TO ME! TALK TO YOUR NEUROLOGISTS.

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@tonyagann

I have ICD and l can't l that test. Is a CT scan of the brain ok? I have appointment 4-2. Please advise. Thank U

Jump to this post

Hello @tonyagann — welcome to Mayo Connect. We are glad you found us. I have no medical training or medical background but I think your question is best asked of your doctor. It is a good question. I did find some information here that may give you some helpful information.

American Heart Association — Devices that may Interfere with Implantable Cardioverter Defibrillators (ICDs):
http://www.heart.org/HEARTORG/Conditions/Arrhythmia/PreventionTreatmentofArrhythmia/Devices-that-may-Interfere-with-Implantable-Cardioverter-Defibrillators-ICDs_UCM_448464_Article.jsp#.Wqcq6GobOUk

CT Appears Safe in Patients With Pacemakers, ICDs:
https://www.medpagetoday.com/cardiology/arrhythmias/44503

John

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My question is what tests can you take to find out about neuropathy? I have it l take Gabapentin for it. It works but am concerned about the weight gain. So l just take night and it works but l was taking it three times 600 mg. So that is my new question. Thank

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@tonyagann

I have ICD and l can't l that test. Is a CT scan of the brain ok? I have appointment 4-2. Please advise. Thank U

Jump to this post

Thank you..l did talk my Dr. I just wanted to another person perspective on the situation. I thought that this was a place you could ask questions or ask somebody for their possible opinions on stuff of issues of neuropathy. I just wanted to know how other people live with it and what are some of the things they do to take away the discomfort thank you for your information. I will not ask that question again of you I just wanted to know how other people live with it and what are some of the things they do to take away the discomfort. Thank you for information. I will not ask that question again of you.

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@tonyagann

I have ICD and l can't l that test. Is a CT scan of the brain ok? I have appointment 4-2. Please advise. Thank U

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Thank you for the great information.

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@tonyagann

I have ICD and l can't l that test. Is a CT scan of the brain ok? I have appointment 4-2. Please advise. Thank U

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Thank U John.

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@tonyagann

My question is what tests can you take to find out about neuropathy? I have it l take Gabapentin for it. It works but am concerned about the weight gain. So l just take night and it works but l was taking it three times 600 mg. So that is my new question. Thank

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The test is an Electromyography (EMG).

EMG (Electromyography): About your Mayo Clinic Test – YouTube

Liked by steeldove

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@tonyagann

My question is what tests can you take to find out about neuropathy? I have it l take Gabapentin for it. It works but am concerned about the weight gain. So l just take night and it works but l was taking it three times 600 mg. So that is my new question. Thank

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Hi @tonyagann, weight gain can be a problem with many autoimmune diseases. As hard as it may be it does take a combination of lifestyle changes in diet and exercise to help with that. The Foundation for Peripheral Neuropathy has some good information to help with that on their website here:

https://www.foundationforpn.org/living-well/

John

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Just read an interesting article in the Science Daily – Gluten-free diet may help people with neuropathic pain.

https://www.sciencedaily.com/releases/2018/02/180228160432.htm

John

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@tonyagann

My question is what tests can you take to find out about neuropathy? I have it l take Gabapentin for it. It works but am concerned about the weight gain. So l just take night and it works but l was taking it three times 600 mg. So that is my new question. Thank

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Regarding Neuropathy problems the Nerve Conduction Test & Doppler test may be taken so as to find out whether we are having peripheral neuropathy or Ulnar neuropathy problem. I am having Ulnar neuropathy problem which makes my movement difficult. Neurologist didn't prescribe direct medicine. I am taking only Lipitab & Ecosprin. Peg SR. Pl.consult Neuro & take as some medicines may trigger dizziness which I underwent .

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@tonyagann

My question is what tests can you take to find out about neuropathy? I have it l take Gabapentin for it. It works but am concerned about the weight gain. So l just take night and it works but l was taking it three times 600 mg. So that is my new question. Thank

Jump to this post

Thanks for information

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