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?

Hi, Cullen and John,, my name is Gary and I have had diabetes since mid 90s ,, father was diabetic and passed and a brother also and have never heard of femoral. Neuropathy ,,, until it happened. Was looking for info I'm. 62 have exhausted funds, no medical, no job no one will hire cuz I fall,,, on a cane,,,, does this ever get better stop being so weak., stop having so much pain , have meds Dr. Prescription , ,, thanks for any info,, can give more back story if needed,,,, Gary

Hi @garydaniel — welcome to Mayo Clinic Connect. I've had idiopathic small fiber peripheral neuropathy with just numbness in the feet and ankles. I had not heard of femoral neuropathy but can imagine it can be painful. I did find some good information on it here that may be helpful.

What to know about femoral neuropathy
https://www.medicalnewstoday.com/articles/324084.php

NIH – The natural history of diabetic femoral neuropathy.
https://www.ncbi.nlm.nih.gov/pubmed/1852856

Are you able to keep your diabetes under control? I think that could also make things worse.

You mentioned you are unable to work. Have you considered applying for disability?

3 Tips for Receiving Disability Benefits for Neuropathy
https://www.disability-benefits-help.org/disabling-conditions/neuropathy-and-social-security-disability/tips

I have CIDP too and have IVIG infusions 2 days a month. You might want to discuss this treatment option as well.

@sherlock

I have CIDP too and have IVIG infusions 2 days a month. You might want to discuss this treatment option as well.

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Thank you how do you feel on it I am so sensitive to everything, I don’t know which one to do plasmapherisis or IVIG

@sherlock

I have CIDP too and have IVIG infusions 2 days a month. You might want to discuss this treatment option as well.

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@sherlock have you found any improvement with the IVIG?

Also, what after effects have you experienced?

Thanks,
Rose

The IVIG treatments have helped me tremendously. I get a boost of energy every month, no side effects except a headache sometimes when the infusion rate is too fast. It also helps my pain levels from SFN which spike before montly IVIG treatments. It keeps my CIDP from progressing. It does take a chunk of time though, about 6-7 hours each day.

Thank you Coleen. My issue is that the bottoms of feet burn most of the time. Been checked for sugar, B12, a bunch of stuff including Lyme disease. Been to a neurologist, had all the tests, no results. I'm currently even trying acupuncture, with limited results since starting in Sept 2018. Have you ever heard of using a laser, or magnesphere (sp?)?

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@waltermc

Thank you Coleen. My issue is that the bottoms of feet burn most of the time. Been checked for sugar, B12, a bunch of stuff including Lyme disease. Been to a neurologist, had all the tests, no results. I'm currently even trying acupuncture, with limited results since starting in Sept 2018. Have you ever heard of using a laser, or magnesphere (sp?)?

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Hello @waltermc, welcome to Mayo Clinic Connect. I've read about low-level laser therapy but have not heard of magnesphere therapy. I did find an article on it though. I'm sure others here who have tried laser therapy can share their experience.

http://magneceutical.com/providers/safety_risks.php?background=FFFFFF&language=en&langdisplay=hide

Are you able to tell us what tests the neurologist did? Did he give you a diagnosis?

@waltermc

Thank you Coleen. My issue is that the bottoms of feet burn most of the time. Been checked for sugar, B12, a bunch of stuff including Lyme disease. Been to a neurologist, had all the tests, no results. I'm currently even trying acupuncture, with limited results since starting in Sept 2018. Have you ever heard of using a laser, or magnesphere (sp?)?

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Coleen can you tell me what are all the tests your neurologist has done

@johnbishop

Hello @waltermc, welcome to Mayo Clinic Connect. I've read about low-level laser therapy but have not heard of magnesphere therapy. I did find an article on it though. I'm sure others here who have tried laser therapy can share their experience.

http://magneceutical.com/providers/safety_risks.php?background=FFFFFF&language=en&langdisplay=hide

Are you able to tell us what tests the neurologist did? Did he give you a diagnosis?

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As far as tests the neurologist did, they did 2, both involving electrodes. I can tell tell you what they were called. The diagnosis was "borderline normal".

@waltermc

As far as tests the neurologist did, they did 2, both involving electrodes. I can tell tell you what they were called. The diagnosis was "borderline normal".

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@waltermc there is another discussion that you may be interested in where members are discussing laser therapy. I'm tagging other members who have mentioned laser therapy in a post to see if they can share their experience. @mikween @janetdh @swiss @holhealthcare and @dutchman09 may be able to share their experience with you.

Groups > Neuropathy > Laser Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/neuropathy-1/

I have not tried low level laser therapy myself although I have looked into it. I just personally don't want to pay a lot of money for something that may or may not work based on discussions I've had with the treatment center offering the low level laser therapy. I have a friend that had many treatments and feels it has helped them but is pretty subjective and different for each person. There is some good information available regarding the low level therapy for pain issues.

The Use of Low Level Laser Therapy (LLLT) For Musculoskeletal Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4743666/

I have been thinking about getting one of the new SaunaSpace single units which is a near infrared light therapy device.
https://saunaspace.com/shop/near-infrared-single-light-panel/

Hi Rose @geegie, Thank you for the message. I thought I would answer your questions from your private message here in the discussion. I think it helps everyone and others may have the same question or may be able to offer more suggestions.

Have you known IVIG to help numbness?

I have not heard of numbness being helped with any drug or topical medication. There are other members here with pain and numbness who may be able to provide an answer. I'm just speaking from my experience of only having numbness and my neurologist telling me there is no treatment using drugs or topical cremes/medications that will help numbness.

Don't know why neurologist wants me to stop taking B12 even if my levels are normal. Do you? He said parts of B12 can be stored in the body????? Do you know anything about that?

I take 6000 mcg of B12 daily as part of my supplements (3000 mcg morning and evening). I do that because the capsules are not quite as good as the liquid/lipsomal version of B12 for absorption by the body. I was taking 5000 mcg lipsomal B12 before it became unavailable. Everything I've read says B12 is OK to take in high doses…and it helps keep the body’s nerve and blood cells healthy and helps make DNA. More information here:
http://www.phlabs.com/are-you-overdoing-it-on-the-b12

I would talk to the neurologist and ask for specific reasons why he wants you to stop taking the B12. There may be an underlying condition to consider but if it were me, I would want the decision to make sense to me.

I'm hoping other members with experience can share here.

Thanks!
John

@johnbishop

Hello @waltermc, welcome to Mayo Clinic Connect. I've read about low-level laser therapy but have not heard of magnesphere therapy. I did find an article on it though. I'm sure others here who have tried laser therapy can share their experience.

http://magneceutical.com/providers/safety_risks.php?background=FFFFFF&language=en&langdisplay=hide

Are you able to tell us what tests the neurologist did? Did he give you a diagnosis?

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I tried low laser therapy–it was costly and did nothing. Have not heard of magnesphere therapy–will look it up. Have pretty much given up on treatment. Have tried most that are available, have had 2 MRI's and 3 EMG's. Have deteriorated over the last six years and have little hope for a cure in my lifetime. Seems there is little interest in research for a cure–with 2 million + people suffering with PN there would be more aggressive research.

@johnbishop

@waltermc there is another discussion that you may be interested in where members are discussing laser therapy. I'm tagging other members who have mentioned laser therapy in a post to see if they can share their experience. @mikween @janetdh @swiss @holhealthcare and @dutchman09 may be able to share their experience with you.

Groups > Neuropathy > Laser Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/neuropathy-1/

I have not tried low level laser therapy myself although I have looked into it. I just personally don't want to pay a lot of money for something that may or may not work based on discussions I've had with the treatment center offering the low level laser therapy. I have a friend that had many treatments and feels it has helped them but is pretty subjective and different for each person. There is some good information available regarding the low level therapy for pain issues.

The Use of Low Level Laser Therapy (LLLT) For Musculoskeletal Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4743666/

I have been thinking about getting one of the new SaunaSpace single units which is a near infrared light therapy device.
https://saunaspace.com/shop/near-infrared-single-light-panel/

Jump to this post

Thank you for the info. I didn't feel warm & fuzzy about the laser therapy either. The guy I spoke with is a chiropractor and wants $2,200 for a month's treatments (3 times a week) and he recommends 2-3 months worth of treatments. That's a lot of money for something that "might" work.

Thank you all for posting about laser. I'm looking into it too. If my insurance will cover it, I'll try it, if they won't, I won't. It bothers me that chiropractors are offering low level laser, not doctors … I will also ask my neurologist about laser but – if it was effective, I think she would have already told me. Peggy

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