Living with Neuropathy - Welcome to the group

@ronoejello1 Gabapentin is horrible but that’s all I have. My legs get very weak when I have been up and around for awhile. Especially by the end of the day, I can barely stand still without them shaking.
I don’t know how I could do too much walking without them totally collapsing!
My muscles are getting weak so I use a walker outside so I don’t fall. I’ve already had both my knees replaced because of arthritis.

How did things go with Dr Walk? Was he all you expected?

@dinterman Hi Tammy, I’ve had both my knees replaced and it hasn’t caused me any problems. The pain I had from my knees was horrible so there was no choice. I had them done one year apart.
My neuropathy has recently increased, but it is not related to the knee replacement surgeries.

Hi I live in New Zealand.
I suffer from Neuropathy, I have both lumbar spinal stenosis and cubital tunnel syndrome both cause my neuropathy. I look forward to hearing how others deal it. I have been told taking B12, B1 and certain amino acids can help would love your thoughts on this.
Many Thanks
Deana

Good evening @dinterman and welcome to Connect. It kind of looks like you and I have some sharing to do. First of all, I love your name. My daughter has the same name although she spells it Tami. She will be 59 next month. However, she's still my adorable little girl. We used the Russian princess name of Tamarra.

However, she did not inherit my propensity for joint surgeries. I have had two TKR surgeries. The first one was 10 years ago........on the left knee because it was more painful than the right knee even though the right knee was quite a bit more of a mess. That traditional TKR was done well by my surgeon and yet it took quite a while to become a part of my body again, The second TKR on the right knee was done in 2021 by way of a robotic surgery. With the improvement in the technology and the attention paid to pre and post-surgery exercises, the second knee was an absolute "textbook" example. I was driving, climbing stairs, and walking along the Mississippi River very promptly.

Now for the relationship with my SFN (small fiber neuropathy), diagnosed by a skin biopsy in 2013. Before the recent TKR, my surgeon spent some very valuable time going over the TKR process and the interaction with my SFN. He shared videos with me and explained the benefits of the robotic TKR.. We also spent quite a bit of time discussing and making shared decisions about pain medication. Since 2013 I have controlled my neuropathy pain with carefully measured doses of medical cannabis tinctures and topicals. Together we made decisions about the medication issues and it worked much better than I expected.

What areas of your body are impacted by your neuropathy? Do you do regular exercises to keep everything "up and running"? Are you worried about the pain and numbness? Here are the biggest gifts you can give yourself. Ice.....Ice......Ice. Elevate, Elevate, Elevate. You can get a specially fitted ice pack for your knee or use an ice machine. I actually purchased a special wedge pillow for the elevation process.

Do you have your TKR scheduled yet? Don't hesitate to let me know of any concerns and questions. I am here for you.

May you be safe, protected, and free from inner and outer harm.
Chris

@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/

Good morning,

I posted a comment a couple of days ago but nobody replied. I was wondering if anyone knows if any common medication or medication type can activate or exacerbate PN symptoms? Please let me know if anyone has any information. Thanks for providing this great Board! I am trying to find something to alleviate my pins and needles now to no avail so far. . . Caleb

If you Google it you will find a list of medications that can exacerbate PN

As per my question just asked, I've found that my gout medicine can cause PN, as well as common blood pressure meds that I AM taking! This is staggering.

Hi Caleb @highdesertdweller, Welcome to Connect. Sorry I missed your earlier post. You are not alone in your neuropathy journey. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I'm sorry to hear that you haven't found much relief yet. I'm glad you found Connect which also started my journey of learning as much as I can about neuropathy and what treatments might be helpful. You are your best advocate and learning as much as you can about neuropathy is key to finding something that will help.

Here are a couple of other discussions you might find helpful:
--- What helps the symptoms of Small Fiber Neuropathy?: https://connect.mayoclinic.org/discussion/tingling-from-small-fiber-neurapathy/
--- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
--- Pins and needles plus vibrations SFN?: https://connect.mayoclinic.org/discussion/pins-and-needles-plus-vibrations-sfn/.

For learning more about neuropathy, here are my two go to websites:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.

The Foundation for Peripheral Neuropathy also has a comprehensive list of complementary and alternative treatments you might find helpful - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Do you mind sharing a little more about your neuropathy diagnosis?

Thanks, John. Mine is the result of diabetes. My levels are low, below 7, however I have these terrible PN symptoms. Honestly, I'm obsessing on my feet right now. Fixated on such. My mind is going along with my physical problems, so need to address that as well, as I can't sleep and I'm practically hysterical with the pins and needles and sensitivity, et al. Caleb