Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@colleenyoung

Peripheral neuropathy is definitely a topic of great interest affecting many Connect members. @johnwburns has started several off-shoot discussions around specific issues and peripheral neuropathy. Please see these discussion threads and join in with your thoughts and experiences:

* Peripheral Neuropathy – Stretching and Exercise http://mayocl.in/2d4r1iC
* Peripheral Neuropathy – Everything cures it and nothing cures it http://mayocl.in/2cOYaCJ
* Peripheral Neuropathy and the Spine http://mayocl.in/2cOZ41O

Given these and a number of other discussion threads dedicated to peripheral neuropathy, it might be time to start a group specifically dedicated to the topic.

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My husband has cerebellum atrophy. One lady (who lives in South Africa also was diagnosed with it but I lost her email address. Please, could she reply or anyone who has been diagnosed with cerebellum atrophy or cerebral atrophy. He was seen at Mayo Clinic in January of 2015 and given three to four years to live.

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@johnbishop

Sept 17th meeting for the 20 Year Celebration for the MN Neuropathy Association (www.neuropathy-mn.org). If others in the Minneapolis area want to attend the meeting you need to register soon as it’s a special meeting with box lunches provided that they need to have a headcount. It should be an interesting meeting. If you want the registration form, I can email you a copy.

Here is the agenda:

9:30 – 10:00 am Registration
Coffee or juice and pastries/snacks

10:00 – 10:15 am Opening remarks, announcements

10:15 – 11:00 am Dr David Walk: The Basics of Neuropathy
30-minute presentation with 10 minutes for Q and A

Dr. David Walk is a neurologist at the University of Minnesota Medical Center Fairview with a subspecialty interest in neuromuscular diseases. Dr. Walk currently directs the University of Minnesota’s multidisciplinary ALS and Charcot-Marie-Tooth clinics. Named a “top doctor” by Minneapolis St. Paul Magazine, he believes that the management of neuromuscular disorders requires a team dedicated to providing comprehensive care.
Dr. Walk has been an Associate Professor of Neurology at the University of Minnesota Medical School since 2005 and a staff neurologist at the University of Minnesota Medical Center, Fairview since 1999; he is also the Medical Director of the electromyography laboratory. Dr. Walk’s research interests include ALS and other motor neuron disorders, Charcot-Marie-Tooth disease, and quantitative sensory testing in patients with neuropathic pain. Dr. Walk’s ongoing research projects are focused on ALS as well as sensory evaluation in neuropathy and neuropathic pain.

11:00 – 11:45 am Pam Shlemon, Director of Foundation of Peripheral Neuropathy
The Foundation for Peripheral Neuropathy – What’s new & Living well with PN!
30-minute presentation with 10 minutes for Q and A

Pam Shlemon is the president and executive director of the Foundation for Peripheral Neuropathy (FPN). Founded in 2007, Ms. Shlemon plays a critical role in shaping the research strategy as well as guiding strategic and programmatic direction and spearheading the Foundation’s fundraising programs. To achieve the Foundation’s mission she is fostering collaboration among a national team of neuroscientists and physicians dedicated to neuropathy research and treatment to develop new and effective therapies that can reverse, reduce and one day cure peripheral neuropathy. Ms. Shlemon, who earned her degree in business administration from Eastern Illinois University, has more than 25 years of executive management experience in the health care industry. Prior to joining the Foundation, Ms. Shlemon was the Regional Vice President for ChartOne, a national leader in technology solutions for the healthcare industry. As a top-performing executive, leading major initiatives she was key contributor to enterprise-level planning and decision making. She is also a member of the Board of Directors of Arts Refreshing the Soul, and resides in the Chicago metro area.

11:45 – noon Break, pick up box lunches

noon – 12:30 pm Lunch

12:30 – 1:15 pm Dr William Kennedy – Simple inventions that quantify touch on fingers, vibration on toes and sweating in neuropathy
30-minute power point presentation with 10 minutes for Q and A

Dr William Kennedy: Medical School-Marquette University; Master Degree in Biochemistry-University of Wisconsin; Internship-Philadelphia General Hospital; Residency in Neurology-Mayo Clinic; Professor of Neurology, University of Minnesota
Board certified in 1. Neurology, 2. Electromyography 3. Electroencephalography.
~~Honorary member of the Am. Academy of Neurology and the Am. Neurological Association
~~Lifetime Achievement Award, Am. Ass’n Neuromuscular & Electrodiagnostic Medicine’s highest honor.
~~Selected as a “Giant of Neurology” by the American Academy of Neurology Foundation
~~Discoverer of Hereditary spinal and bulbar proximal spinal atrophy of late onset (called “Kennedy’s Disease”)
~~Author of >150 peer reviewed scientific papers.
Principle interests:
1. Structure of nerves and other organs affected by neuropathy.
2. Invention of fast, simple methods to diagnose and quantify peripheral neuropathy.

1:30 pm Dessert, door prizes, closing announcements

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When is the next meeting of this group? I have ideopathic peripheral neuropathy and live in the St. Paul area. My friend had Dr. Walk as his doctor for many years for his neuropathy. I hope you had a good meeting in September.

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@johnbishop

Sept 17th meeting for the 20 Year Celebration for the MN Neuropathy Association (www.neuropathy-mn.org). If others in the Minneapolis area want to attend the meeting you need to register soon as it’s a special meeting with box lunches provided that they need to have a headcount. It should be an interesting meeting. If you want the registration form, I can email you a copy.

Here is the agenda:

9:30 – 10:00 am Registration
Coffee or juice and pastries/snacks

10:00 – 10:15 am Opening remarks, announcements

10:15 – 11:00 am Dr David Walk: The Basics of Neuropathy
30-minute presentation with 10 minutes for Q and A

Dr. David Walk is a neurologist at the University of Minnesota Medical Center Fairview with a subspecialty interest in neuromuscular diseases. Dr. Walk currently directs the University of Minnesota’s multidisciplinary ALS and Charcot-Marie-Tooth clinics. Named a “top doctor” by Minneapolis St. Paul Magazine, he believes that the management of neuromuscular disorders requires a team dedicated to providing comprehensive care.
Dr. Walk has been an Associate Professor of Neurology at the University of Minnesota Medical School since 2005 and a staff neurologist at the University of Minnesota Medical Center, Fairview since 1999; he is also the Medical Director of the electromyography laboratory. Dr. Walk’s research interests include ALS and other motor neuron disorders, Charcot-Marie-Tooth disease, and quantitative sensory testing in patients with neuropathic pain. Dr. Walk’s ongoing research projects are focused on ALS as well as sensory evaluation in neuropathy and neuropathic pain.

11:00 – 11:45 am Pam Shlemon, Director of Foundation of Peripheral Neuropathy
The Foundation for Peripheral Neuropathy – What’s new & Living well with PN!
30-minute presentation with 10 minutes for Q and A

Pam Shlemon is the president and executive director of the Foundation for Peripheral Neuropathy (FPN). Founded in 2007, Ms. Shlemon plays a critical role in shaping the research strategy as well as guiding strategic and programmatic direction and spearheading the Foundation’s fundraising programs. To achieve the Foundation’s mission she is fostering collaboration among a national team of neuroscientists and physicians dedicated to neuropathy research and treatment to develop new and effective therapies that can reverse, reduce and one day cure peripheral neuropathy. Ms. Shlemon, who earned her degree in business administration from Eastern Illinois University, has more than 25 years of executive management experience in the health care industry. Prior to joining the Foundation, Ms. Shlemon was the Regional Vice President for ChartOne, a national leader in technology solutions for the healthcare industry. As a top-performing executive, leading major initiatives she was key contributor to enterprise-level planning and decision making. She is also a member of the Board of Directors of Arts Refreshing the Soul, and resides in the Chicago metro area.

11:45 – noon Break, pick up box lunches

noon – 12:30 pm Lunch

12:30 – 1:15 pm Dr William Kennedy – Simple inventions that quantify touch on fingers, vibration on toes and sweating in neuropathy
30-minute power point presentation with 10 minutes for Q and A

Dr William Kennedy: Medical School-Marquette University; Master Degree in Biochemistry-University of Wisconsin; Internship-Philadelphia General Hospital; Residency in Neurology-Mayo Clinic; Professor of Neurology, University of Minnesota
Board certified in 1. Neurology, 2. Electromyography 3. Electroencephalography.
~~Honorary member of the Am. Academy of Neurology and the Am. Neurological Association
~~Lifetime Achievement Award, Am. Ass’n Neuromuscular & Electrodiagnostic Medicine’s highest honor.
~~Selected as a “Giant of Neurology” by the American Academy of Neurology Foundation
~~Discoverer of Hereditary spinal and bulbar proximal spinal atrophy of late onset (called “Kennedy’s Disease”)
~~Author of >150 peer reviewed scientific papers.
Principle interests:
1. Structure of nerves and other organs affected by neuropathy.
2. Invention of fast, simple methods to diagnose and quantify peripheral neuropathy.

1:30 pm Dessert, door prizes, closing announcements

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Hello @johnhans, welcome to Mayo Connect and thank you for your question. I also have small fiber peripheral neuropathy which was diagnosed as idiopathic and possibly hereditary.

The Minnesota Neuropathy Association normally puts the monthly meeting schedule on their website – http://www.neuropathy-mn.org/ but it still shows the July 28 meeting and has not been updated since then. They normally hold 10 monthly meetings a year and are currently looking for people who are interested in serving on their board of directors. The September 17th 20 year celebration meeting with the speakers above was to try and bring in new members. We had around 100 guests at the celebration. I am a member of The Minnesota Neuropathy Association and will post the next meeting here on Connect as soon as I find out when/where it will be held.

Hope to see you at the next meeting!

Here are my notes from the meeting:
Program for Minnesota Neuropathy Association’s 20th Anniversary Event
Sept 17th, 2016

Dr. David Walk: “The Basics of Neuropathy”

http://www.neurology.umn.edu/profile_walk.html

Dr. Walk gave us the high level view of what neuropathy is along with the basic anatomy of the nerves and how the small and large fiber nerves work with the brain to tell us what we feel, etc. He told us his work is primarily research but that he does see some patients. Some, but not all of the topics he discussed:

– Effect of VM202 injection for patients with diabetes induced PN https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3677315/

– PCORI – Patient Centered Outcome Research Institute Trial
http://www.pcori.org/news-release/pcori-board-approves-21-million-fund-research-managing-and-reducing-opioid-use-chronic
https://trialbulletin.com/lib/entry/ct-02260388

– CMT – Charcot-Marie-Tooth
Dr. Walk discussed the genetic component and that the hands and feet are affected.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4392824/

– PXT-3003 Study for CMT1A
https://clinicaltrials.gov/ct2/show/study/NCT02579759?show_locs=Y#locn

– CIDP – The Gripper Study: IVIG Treatment Related Fluctuations in CIDP
https://trialbulletin.com/lib/entry/ct-02414490

Pam Shlemon – Director of Foundation for Peripheral Neuropathy
“What’s new & living well with PN”

Pam shared how The Foundation for Peripheral Neuropathy got started and presented a slide show of the foundations current projects. Some of the topics she discussed:

– Clinical Trials – https://clinicaltrials.gov/
– Peripheral Neuropathy Research Registry – https://www.foundationforpn.org/research/research-registry/
– Exercises & Physical Therapy for PN
https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

Dr. William Kennedy
“Simple inventions that quantify touch on finger, vibration on toes and sweating in neuropathy”

My favorite speaker of the day. All of the speakers had a Q & A after their talk and one of the burning questions of the day was how many people are affected by neuropathy in the U.S. and around the world. Pam and Dr. Walk had both said they thought the numbers were around 20 million in the U.S. and up to 128 million in China. Dr. Kennedy said he would take exception with his younger counterparts and said it’s more like 100% if you live long enough. Since there was some discussion of idiopathic PN, Dr. Kennedy asked if we knew how the diagnosis is made for idiopathic. Got my best laugh of the day when he told us it got the name from the idiot neurologist who diagnosed it.

Dr. Kennedy went on to talk about his research work on developing a tool he would like to make available in every GPs office to easily test for neuropathy.
More information can be found on his website:

http://kennedylab.med.umn.edu/

John

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@johnbishop

Sept 17th meeting for the 20 Year Celebration for the MN Neuropathy Association (www.neuropathy-mn.org). If others in the Minneapolis area want to attend the meeting you need to register soon as it’s a special meeting with box lunches provided that they need to have a headcount. It should be an interesting meeting. If you want the registration form, I can email you a copy.

Here is the agenda:

9:30 – 10:00 am Registration
Coffee or juice and pastries/snacks

10:00 – 10:15 am Opening remarks, announcements

10:15 – 11:00 am Dr David Walk: The Basics of Neuropathy
30-minute presentation with 10 minutes for Q and A

Dr. David Walk is a neurologist at the University of Minnesota Medical Center Fairview with a subspecialty interest in neuromuscular diseases. Dr. Walk currently directs the University of Minnesota’s multidisciplinary ALS and Charcot-Marie-Tooth clinics. Named a “top doctor” by Minneapolis St. Paul Magazine, he believes that the management of neuromuscular disorders requires a team dedicated to providing comprehensive care.
Dr. Walk has been an Associate Professor of Neurology at the University of Minnesota Medical School since 2005 and a staff neurologist at the University of Minnesota Medical Center, Fairview since 1999; he is also the Medical Director of the electromyography laboratory. Dr. Walk’s research interests include ALS and other motor neuron disorders, Charcot-Marie-Tooth disease, and quantitative sensory testing in patients with neuropathic pain. Dr. Walk’s ongoing research projects are focused on ALS as well as sensory evaluation in neuropathy and neuropathic pain.

11:00 – 11:45 am Pam Shlemon, Director of Foundation of Peripheral Neuropathy
The Foundation for Peripheral Neuropathy – What’s new & Living well with PN!
30-minute presentation with 10 minutes for Q and A

Pam Shlemon is the president and executive director of the Foundation for Peripheral Neuropathy (FPN). Founded in 2007, Ms. Shlemon plays a critical role in shaping the research strategy as well as guiding strategic and programmatic direction and spearheading the Foundation’s fundraising programs. To achieve the Foundation’s mission she is fostering collaboration among a national team of neuroscientists and physicians dedicated to neuropathy research and treatment to develop new and effective therapies that can reverse, reduce and one day cure peripheral neuropathy. Ms. Shlemon, who earned her degree in business administration from Eastern Illinois University, has more than 25 years of executive management experience in the health care industry. Prior to joining the Foundation, Ms. Shlemon was the Regional Vice President for ChartOne, a national leader in technology solutions for the healthcare industry. As a top-performing executive, leading major initiatives she was key contributor to enterprise-level planning and decision making. She is also a member of the Board of Directors of Arts Refreshing the Soul, and resides in the Chicago metro area.

11:45 – noon Break, pick up box lunches

noon – 12:30 pm Lunch

12:30 – 1:15 pm Dr William Kennedy – Simple inventions that quantify touch on fingers, vibration on toes and sweating in neuropathy
30-minute power point presentation with 10 minutes for Q and A

Dr William Kennedy: Medical School-Marquette University; Master Degree in Biochemistry-University of Wisconsin; Internship-Philadelphia General Hospital; Residency in Neurology-Mayo Clinic; Professor of Neurology, University of Minnesota
Board certified in 1. Neurology, 2. Electromyography 3. Electroencephalography.
~~Honorary member of the Am. Academy of Neurology and the Am. Neurological Association
~~Lifetime Achievement Award, Am. Ass’n Neuromuscular & Electrodiagnostic Medicine’s highest honor.
~~Selected as a “Giant of Neurology” by the American Academy of Neurology Foundation
~~Discoverer of Hereditary spinal and bulbar proximal spinal atrophy of late onset (called “Kennedy’s Disease”)
~~Author of >150 peer reviewed scientific papers.
Principle interests:
1. Structure of nerves and other organs affected by neuropathy.
2. Invention of fast, simple methods to diagnose and quantify peripheral neuropathy.

1:30 pm Dessert, door prizes, closing announcements

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Thank you for the update on what happened at the meeting. This is some very interesting and informational material here in the links.

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I have peripheral neuropathy from diabetes in my hands and feet all the way to the calves of both legs. It’s getting to be so hard to deal with that painnas it shooting pains and it feels like someone is jamming needles in my hands all the time. They burn also. I’m allergic to most meds and have recently became allergic to steroids!
If anyone has any suggestions I would be happy to hear them and from the neuropathy I drop lots of stuff!

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Hello @tbeckys, I have a little bit of the dropsies myself with my polymyalgia. The doctor put me back on prednisone but I am slowly reducing the dosage because it has it’s ugly side affects which I’m sure you know. This is my second time around with the PMR. In addition I have SFPN in both legs but only have the numbness and no pain so I don’t have to take any meds for the SFPN. There is some good information on The Foundation for Peripheral Neuropathy’s website – https://www.foundationforpn.org/living-well/ of coping with neuropathy. I have had some success reducing the numbness in my legs using a specific list of supplements and others I know have found relief from the pain associated with PN. There are so many scams that deal with healing/fixing neuropathy that a person really needs to be skeptical when trying different treatments and do your homework.

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It seems like there are so many kinds/levels of PN that it’s hard to lump treatments into one. Mine isn’t painful most of the time … occasional sharp stabs but most of the time just stiff, hot and uncomfortable so mine wouldn’t be the same as yours where so much pain is involved. I think it might be helpful if you have a pain management clinic or facility within handy reach, to contact them after checking their qualifications within your medical community, perhaps they have a more specific view of pain management than a GP – good luck and hope you have success.

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1. see a neurologist. 2. get an EMG.

Consider gabapentin.

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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taking gabapentin 300mg qid. it helps for the shooting pains that seem to go along with Neuropathy.

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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I agree with your comment, but please don’t YELL using all caps. it’s rude.

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see a neurologist. I take gabapentin as well for my PN. At night, I need to take Trazadone for Restless Legs Syndrome (side effect from Gabapentin?) and sleep with socks on my feet to keep the pain at bay during the night.

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@johnwburns

I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren’s syndrome.  I take gabapentin and duloxetine but pain isn’t the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you’ll have better luck with the chemo induced version.

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After 10 years of very painful neuropathy, I am now trying a somewhat unconventional treatment. Medical Cannabis. it takes away almost all my pain and am left with almost complete numbness in both feet/legs. After being in pain for so many years
I welcome the numbness. Yes, it does make ambulating somewhat interesting, but I’ll take it instead of the pain.

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

Jump to this post

I agree @medic7054. ALL CAPS is considered shouting in online etiquette. In fact our community guidelines discourage the use of all caps https://connect.mayoclinic.org/community-guidelines/

However, having said that, one member pointed out to me that she writes in all caps because she has poor eye sight due to a degenerative condition. This was not something I had considered and she didn’t realize that all caps was considered shouting. Thus I taught her how to increase the font size on her computer (Ctrl +), and she stopped using all caps.

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@tbeckys

I have peripheral neuropathy from diabetes in my hands and feet all the way to the calves of both legs. It’s getting to be so hard to deal with that painnas it shooting pains and it feels like someone is jamming needles in my hands all the time. They burn also. I’m allergic to most meds and have recently became allergic to steroids!
If anyone has any suggestions I would be happy to hear them and from the neuropathy I drop lots of stuff!

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Try marijuana 30%thc70%cbd

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Husband has autonomic neurology with pain especially in his hand. He wears golf gloves and says it cuts the pain in half. Neurologist at Mayo says he can’t help him as he needs a muscle/neurologist. Has tests on November 14 and hopefully will see a doctor after that. Gabapentin and Lyrica does not work for him.

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