Living with Neuropathy - Welcome to the group

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?

@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?

@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

I know that men are usually very upset by hair loss and I understand. I am a 62 year old woman and my hair is falling out too.
In 2019, when I was first diagnosed with neuropathy, all my body hair had already fallen out. I was not prepared for the hair on my head to fall out. I am embarrassed and distressed and depressed over this. I understand and sympathize with all of you.
People keep telling me to use the hair and nail vitamins and I keep telling them the hair loss is due to my neuropathy. Almost no one I know understands neuropathy, and most people have even heard of it. When I was diagnosed with fibromyalgia everyone knew at least something about it and when I was diagnosed with rheumatoid arthritis a large number of people I knew had it also. But I can't seem to find anyone that understands neuropathy except my doctors. I looked for a local support group and there aren't any.

I know that men are usually very upset by hair loss and I understand. I am a 62 year old woman and my hair is falling out too.
In 2019, when I was first diagnosed with neuropathy, all my body hair had already fallen out. I was not prepared for the hair on my head to fall out. I am embarrassed and distressed and depressed over this. I understand and sympathize with all of you.
People keep telling me to use the hair and nail vitamins and I keep telling them the hair loss is due to my neuropathy. Almost no one I know understands neuropathy, and most people have even heard of it. When I was diagnosed with fibromyalgia everyone knew at least something about it and when I was diagnosed with rheumatoid arthritis a large number of people I knew had it also. But I can't seem to find anyone that understands neuropathy except my doctors. I looked for a local support group and there aren't any.

"But I can't seem to find anyone that understands neuropathy … "

I sympathize! Not a day goes by I don't feel a twinge of frustration with my friends who may try but can't seem to fully understand what I'm dealing with. Because my PN is largely invisible (except to me!), my friends are disappointed when I don't show instant enthusiasm for activities I once relished without reservation. I'm acutely aware of the toll PN has taken on my life. I thought of this only last evening when I excused myself from the dinner table (as you might guess: a "call of nature"); had any of my friends noticed me as I exited the room, chances are they would not have noticed anything amiss; what they wouldn't have seen was the tentative, furrowed-brow extra-care I was taking just so I wouldn't lose my balance and go Splat! on the dining room floor.

I know exactly how you and I think most of us feel with neuropathy! I was an outgoing person, enjoying getting out and visiting with others, until this happened to me almost four years ago. I am forced to use a walker now and I am unable to stand alone, so a cane is out! I prefer to remain in my home now where I feel safe and can avoid any embarrassing situations. My hair, too, has thinned and there are days I feel like an old woman. I am far from the person I used to be. My good friends now are those who understand this illness and accept me for who I am now. I know I will never be back to the way I was a few years ago and realizing this, I think, is half the battle. We have to make the best of what life throws at us. What else can we do?