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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?
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That is a great improvement. I was just wondering if the laser folks did any measurements. Pain would be the big measurement for me also if I had pain.
What type of laser treatment are you dis cussing?
Your replies are so interesting ... The descriptions of Neuropathy that I read before I joined this group suggested that it was just a complication of diabetes that felt like tingles and needle sticks -- it's way more than that. I was already far beyond the 'needles and tingles' stage and experiencing acute pain; and I'm hypoglycemic, not diabetic, so I didn't know which end was up. I am learning from all of you that there are is a kaleidoscope of symptoms and remedies; most of us seem to be trying new things as we deal with the progression of our condition. It is helpful that we share information here. Peggy
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2 ReactionsHi Peggy @pfbacon ... you have the key! We all share and learn what helps others and may work for us. The more we can learn, the better chance we have of helping ourselves (and hopefully our doctors if we find something that works for us).
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1 ReactionI go to Dr Schwartz in Greenville SC for my laser treatment. You can read about it below at his website. I have gotten about 50% pain relief as long as I take the treatments. I have no numbness only pain.
What is Realief Therapy?
Realief Therapy utilizes a proprietary Class IV therapeutic laser. The laser delivers a specific frequency of light to create a photoelectric effect at the nerve membrane layer. This results in chemical, physiologic, mechanical and structural changes in nerve cell membranes and the surrounding tissue. This process results in a reduction in severity of peripheral neuropathy symptoms – meaning less pain
Needs to be at least 1000mg cbd oil. Helped a little at night sleeping.
Some research news from the Foundation for Peripheral Neuropathy of particular interest if you live in the Baltimore area since John Hopkins is where some clinic trials are in the works.
Global Study on anti-MAG IgM paraprotein-associateD peripheral neuropathy expanding in the US.
-- https://www.foundationforpn.org/2018/12/20/foundation-for-peripheral-neuropathy-supports-expansion-of-anti-mag-peripheral-neuropathy-research/
Hi my dad has just been diagnosed with this. We are waiting on scan results for the underlying reason. He just has numbness in legs and hands and feels as he describes wobbly legs. I'm looking for any tips, what to expect any help appreciated.
Hello @portsu, welcome to Mayo Clinic Connect. Thank you for being an advocate for your dad. I have idiopathic small fiber peripheral neuropathy mostly in both feet, ankles and lower legs. I don't have any associated pain. I have no medical training or background but I can tell you to learn as much as you can about the disease. There are many types of neuropathy and it affects everyone a little different. Most people with neuropathy have symptoms of pain, numbness, tingling, burning sensation and more. I'm one of the 20% or so that only has numbness and tingling with no pain.
Here are a few links that may help you understand a little more about neuropathy.
Peripheral Neuropathy
-- http://www.ninds.nih.gov/disorders/peripheralneuropathy/peripheralneuropathy.htm
NIH PN Fact Sheet - http://bit.ly/2kIPey3
-- https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet
Diagnosing PN - http://bit.ly/2lpduEN
Easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:
-- Peripheral Neuropathy
http://www.ninds.nih.gov/disorders/peripheralneuropathy/peripheralneuropathy.htm
NIH PN Fact Sheet:
-- https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet
Diagnosing PN:
-- http://bit.ly/2lpduEN
Does your dad have any pain associated with his neuropathy?
John
I am a 74 yr old woman that underwent 2 lumbar surgeries in 2018. Most of L1-L-5 has been repaired with grafting, plates, screws and bolts. Shortly after my second back surgery, in April of this year, I developed dropped feet in both feet. The neuro-surgeon finds no fault with his surgery. I’ve been through months of physical therapy with no change. I have tremendous pain from waist down. Recently I had a nerve conduction test which showed severe peroneal neuropathy. I am now being doctored by a pain physician and have been waiting for an appointment for a 2nd opinion from Un of Mi. My feet have been molded for braces and they arrived last week. I find them to be very uncomfortable and am leary as to whether they may cause more damage than giving me the pain relief and stability that I had expected. I walk very poorly with the use of a walker. I started out on a simple journey of repairing a bad back and have ended up with a life of doom and gloom. Any help or knowledge that you could give me would be greatly appreciated. Thank you.