@ronoejello1, @SusanEllen66 - I would be interested to hear how your appointment went with Dr. David Walk also. I had the opportunity to listen to him along with 2 other neurologists at the 2016 Minnesota Neuropathy Association 20 Year Celebration meeting and took notes where they share lots of good information.

Just my notes from attending the program…

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/

I know what you’re going through. My doctor has prescribed 5mg oxycodone and it really works for me. It’s a low dose, and does not make me over euphoric or lethargic. It gives me short term relief and I’m not embarrassed to tell others. As for Dr. Walk I feel that he was much better than the others whom I felt gave me the once-over- cursory inspection UGH!!
He had me receive a cat scan, blood tests, and he personally will be performing an EMG test in a month.
I will keep you in the loop as to the outcome.🙏🙏🙏
We all know that there is no silver-bullet, and that hope and spirit are our greatest gifts.
Susan May tomorrow find a warm and peaceful light on your path!
Stay confident
Warmest Regards
Ron