Notes from the March 2 PNSN meeting chat
14:15:01 From Shana Phelps to Everyone:
https://peripheralneuropathyresources.com/
CJ Holliday’s Group and Website 🙂
14:15:51 From Peripheral Neuropathy Support Network to Everyone:
OUR WEBSITE: https://pnsnetwork.org/
EMAIL: Pat can be reached at leader@dcpnsupport.org.
EVENT CALENDAR: type https://pnsnetwork.org/calendar/
To join PNSN, type https://pnsnetwork.org/about-pn/join-dcpn/
FOOTNOTES: type https://pnsnetwork.org/footnotes-2024/
NEWBIE GUIDE: type https://pnsnetwork.org/neuropathy-newbie-guide/
14:16:34 From Peripheral Neuropathy Support Network to Everyone:
RESOURCES: type https://pnsnetwork.org/resource-flashcards-table-of-contents/
14:19:53 From Shana Phelps to Everyone:
Western Neuropathy Association
Website: https://pnhelp.org
Support Groups: https://pnhelp.org/support-groups
Calendar: https://pnhelp.org/events/upcoming-events
14:21:56 From Glenn Ribotsky to Everyone:
It is not true that there’s nothing one can do. There are even circumstances under which nerves can repair, or new nerve fibers can take over the function for ones that are gone. Of course, one has to arrest the damage processes that are causing the neuropathy–a big reason to try real hard to get a causative diagnosis.
14:26:28 From Shana Phelps to Everyone:
https://neuromuscular.wustl.edu/sensory-small.html
14:28:07 From Glenn Ribotsky to Everyone:
With bad small fiber it would definitely be worth a trial of R-lipoic acid. George’s wife’s situation definitely seems like there might be a hereditary component.
14:28:54 From Shana Phelps to Everyone:
https://neuromuscular.wustl.edu/time/hsn.htm
Here's a list of hereditary sensory neuropathies from Washington University in St. Louis.14:29:31 From Glenn Ribotsky to Everyone:
And even more of those: https://neuromuscular.wustl.edu/time/hmsn.html
14:29:33 From Peripheral Neuropathy Support Network to Everyone:
Brenda: I got myself a notebook to keep track of suggestions you hear at these meetings.
14:30:36 From Peripheral Neuropathy Support Network to Everyone:
Brenda (to help with uncooperative hands): Try a button hook to help grab and reach these.
14:32:11 From Shana Phelps to Everyone:
Brenda: Make the computer your friend
14:32:21 From Peripheral Neuropathy Support Network to Everyone:
Observe your feet every day. Have someone else observe them if you can. Otherwise, put a mirror on the floor so that you can see the bottoms.
14:33:07 From Shana Phelps to Everyone:
Wearing white socks may make it easier to detect injuries to your feet, as well.
14:35:22 From Shana Phelps to Everyone:
A lot of the “experts”, especially specialists, in neuropathies of any form often have a longer wait time. Be prepared for anywhere from 6 months to 2 years, depending on where, whom, and what for.
14:35:31 From Shana Phelps to Everyone:
Helaine: lidocaine prilocaine cream
14:37:09 From Shana Phelps to Everyone:
Brenda: Water aerobics, supplements
Brenda: I get some relief from water exercises in the pool.
14:38:47 From Peripheral Neuropathy Support Network to Everyone:
Idiopathic = we don’t know the cause.
14:40:18 From AS to Everyone:
Question: What are some of the causes you all attribute to the beginning of your neuropathy? Mine began 40 years ago after I injured my lower back after falling off a horse.
14:41:37 From Glenn Ribotsky to Everyone:
There are at least 200 distinct causes of neuropathy. If you count all the hereditary ones being documented through the Human Genome Project, probably double that.
Trauma or injury can certainly be a cause of neuropathy
14:43:03 From Shana Phelps to Everyone:
Replying to “Question: What are …” I have multiple causes for me: autoimmune, possible genetic (looking into it) but not hereditary, injury, possible compression, vitamin deficiencies, and more.
14:44:27 From Shana Phelps to Everyone:
Getting used to the odd neuropathy signals through thinking patterns is one of the goals of Cognitive Behavior Therapy for pain management. Great suggestion, Mike!
14:45:05 From Shana Phelps to Everyone:
Hiking poles can be used instead of a cane if you need it more for balance than “support”.
14:45:18 From Peripheral Neuropathy Support Network to Everyone:
Mike: I wear FootUps that helps me stay upright.
14:45:53 From Shana Phelps to Everyone:
Drop Foot – I was taught to do heel drops and toe raises in Physical Therapy to reduce drop foot symptoms and strengthen the muscles/tendons in the foot and ankle.
14:46:16 From Peripheral Neuropathy Support Network to Everyone:
OUR WEBSITE: https://pnsnetwork.org/
14:51:02 From Brenda Cheadle to Everyone:
Honest Aging- Rosanne M. Leipzig,MD,RhD A Johns Hopkins Press Health Book2023 Good resource book -is in the Fairfax County, VA library system
14:51:08 From Shana Phelps to Everyone:
https://pnhelp.org/resources/audio-and-video
https://www.youtube.com/watch?v=PXufpfJpdZg&feature=youtu.be
Nevro HFX Spinal Cord Stimulator
14:55:19 From Shana Phelps to Everyone:
Brenda recommended OSHER lifelong learning institute through her local college.
14:55:30 From Helaine Zonderman to Everyone:
Lidocaine 2.5% and Prilocaine 2.5% Cream
14:57:52 From Brenda Cheadle to Everyone:
Osher Lifelong Learning Institute was founded by the Osher family who use their considerable good fortune to fund lifelong learning programs across the USA. Google it and you may find one near you. I’m a member at George Mason University here in Fairfax, VA
14:58:35 From Shana Phelps to Everyone:
https://pnhelp.org/events/upcoming-events/march-webinar?occurrenceID=1202
Neuropathy and Mental Health: A Patient’s Perspective
Western Neuropathy Association (WNA)
14:59:53 From Peripheral Neuropathy Support Network to Everyone:
OUR WEBSITE: https://pnsnetwork.org/
15:00:48 From Shana Phelps to Peripheral Neuropathy Support Network(Direct Message):
We’ve got 6 online, 2 in person, and a webinar this month, hence me being so quiet on the facebook group! I’ve been working some funky hours
15:01:07 From granttodd to Everyone:
A compounded foot cream, I use is amitriptyline 2%, It is compounded with diclofenac 3%, cyclobenzaprine 1 % and Lidocaine 5%
15:01:08 From PK to Everyone:
I expect to be prescribed hearing aids — have any of you coped with them with neuropathy?
We just talked about this in our last WNA meeting. Some people used hearing aids to help with their tinnitus.
In-person event perhaps? Maybe in July or August?
HZ: Geography is an issue. We’re all spread out.
15:08:24 From Peripheral Neuropathy Support Network to Everyone:
Pat: Exit survey
Pat, behind the ear types are easier to use. Make sure you have a 30 day trial period to try them so you can return them if needed. Do put them in every day so you develop the skill in installing them and it becomes automatic. My husband uses them for church and films but I wish he would use them daily. Good luck!
15:10:21 From Lindy & Mike Foxworth to Everyone:
Replying to “I expect to be presc…”
I have hearing aids and PN did not interfere.15:10:26 From Shana Phelps to Peripheral Neuropathy Support Network(Direct Message):
Resource for cannabis: https://www.leafly.com/
Also, "marijuana" is considered politically incorrect in certain settings due to the race-related and income-related propaganda associated with that specific term. (Intent: bring awareness; tone: neutral)
15:11:03 From Shana Phelps to Everyone:
Pat: We DO look at the survey responses.
15:12:23 From Shana Phelps to Everyone:
HZ: Duloxetine (Cymbalta)
15:12:33 From Peripheral Neuropathy Support Network to Everyone:
HZ: one of my signs of neuropathy was little lightning strikes in my feet.15:13:34 From Pat Gualtieri to Everyone:
Duloxetine for “sparking”
15:14:00 From Shana Phelps to Everyone:
If you’re new to neuropathy: track what foods you eat, activities you do, how the weather is, what symptoms you have, and any other triggers or sensations from neuropathy.
Over time, you may think you’re neuropathy is getting worse, but see a pattern of it getting better!
15:14:18 From Shana Phelps to Everyone:
CJ Holliday: Journal on your phone
“Journal” or “Notes” app on iPhone
15:15:33 From Peripheral Neuropathy Support Network to Everyone:
Bill: I have kept a diary of diet, events, rest, so that I can follow my progress. This lets me know about “sparking” events.
15:16:24 From Glenn Ribotsky to Everyone:
Benfotiamine is the non flushing variant of B1
15:16:32 From Shana Phelps to Everyone:
Chuck: Alpha Lipoic Acid, benfotiamine
15:16:36 From Peripheral Neuropathy Support Network to Everyone:
CJ: Let for the Journal app on your iPhone. It downloads to your phone when you upgrade to Version 17.3.1
15:18:17 From Chuck to Peripheral Neuropathy Support Network(Direct Message):
for eliminating sparking or electric shocks: I have had success with taking 500 mg benfotiamine daily. 250 mg 2x daily.
15:18:35 From Peripheral Neuropathy Support Network to Everyone:
Pat: what is the difference between the R-Alpha Lipoic Acid and regular Alpha Lipoic Acid.
15:20:12 From Shana Phelps to Everyone:
6-10 ALA :1 r-LA ratio
r-LA is a bit more expensive, but is the key compound, and less reactive to the GI system (especially acid reflux)
15:22:33 From Shana Phelps to Everyone:
There is still much investigation to be done genetically into neuropathy, and more markers coming out regularly.
15:24:50 From Shana Phelps to Everyone:
A limited amount of b12-containing foods exist for vegan persons. Keep an eye on your b12 levels.
15:25:05 From Peripheral Neuropathy Support Network to Everyone:
Nerve Flossing
15:26:56 From Glenn Ribotsky to Everyone:
We had posted this higher up in the chat earlier–but one of the ironic “successes” of the Human Genome Project has been the revelation of just how many hereditary neuropathy conditions there are. Now, admittedly, some of them affect very small number of people–sometimes only individual families–but the knowledge base is growing so fast that it might well be worth getting testing if you haven’t had it in a few years.
15:27:54 From Peripheral Neuropathy Support Network to Everyone:
Rich: Flossing is like scraping the barnacles off your nerves.
15:28:09 From Shana Phelps to Everyone:
Nerve Flossing, Nerve Glides – a form of slow, controlled movement to strengthen and improve nerve health
15:29:39 From Chuck to Everyone:
Replying to “We had posted to … I’ll ask Dr. Hoke again moday.
15:31:08 From Peripheral Neuropathy Support Network to Everyone:
G: what about magnesium and the different types.
15:32:33 From Shana Phelps to Everyone:
Magnesium is helpful for nerve membrane stabilization. It generally helps reduce erroneous signals, such as pain, paresthesias, and more. Magnesium Oxide – can have a laxative effect
15:33:09 From Shana Phelps to Everyone:
Replying to “Magnesium Oxide – ca…” Not typically effective in staying in the bloodstream
15:33:33 From Peripheral Neuropathy Support Network to Everyone:
Shana: B12 deficiency.
15:35:11 From Shana Phelps to Everyone:
methylmalonic acid, homocysteine
Bill: Make sure your doctor codes your tests correctly
15:37:38 From Peripheral Neuropathy Support Network to Everyone:
Since B12 is only available to us through animal-based, it is important for vegans to watch B12 levels to make sure you are getting enough.
15:38:02 From Glenn Ribotsky to Everyone:
Lemon peel–Vitamin C plus magnesium and potassium. Most citrus fruits contain these.
15:39:59 From Chuck to Everyone:
Replying to “Lemon peel–Vitamin … Right. But those things by themselves don’t help me.
15:40:02 From Glenn Ribotsky to Everyone:
There is some controversy out there as to whether fibromyalgia is actually a form of neuropathy. There’s certainly a considerable correlation between those who are diagnosed with fibro and those who have neuropathy, particularly small-fiber.
https://neuromuscular.wustl.edu/mother/mpain.html#fibromyalgia
https://www.niams.nih.gov/health=topics/fibromyalgia#:~:text=Fibromyalgia%20is%20a%20chronic%20(long,a%20heightened%20sensitivity%20to%20pain.
https://neuromuscular.wustl.edu/sensory-pain.html#erythromelalgia
15:45:30 From Shana Phelps to Everyone:
Erythromelalgia
15:45:56 From Chuck to Peripheral Neuropathy Support Network(Direct Message):
I just had a mag gammopathy test done (name may be off). Totally neg. I’m back with a hematology/cancer doc again, after 5 years of being checked out and negative for cancer.
15:46:29 From Chuck to Peripheral Neuropathy Support Network(Direct Message):
Replying to “I just had a mag gam…” so far.
15:46:59 From Shana Phelps to Everyone:
George – I have those issues that your wife has, and it’s been so long I forgot about the slow progression. Mine is an autoimmune circulatory issue, likely a form of small vein vasculitis, or secondary to my APS
15:48:32 From Shana Phelps to Everyone:
Glenn: anti cryoglobulin test
Monoclonal Gammopathies / M-proteins
MGUS – monoclonal gammopathy of uncertain significance
15:52:56 From Shana Phelps to Everyone:
Motion is Lotion
Rest is Rust
Go Slow, Go Low
Sit and be Fit
15:53:10 From Glenn Ribotsky to Everyone:
https://neuromuscular.wustl.edu/antibody/mprotein.htm
Some info on M-proteins
15:55:11 From Shana Phelps to Everyone:
https://www.foundationforpn.org/
https://pnhelp.org/resources/audio-and-video WNA’s webinarshttps://pnhelp.org/events/upcoming-events/march-webinar?occurrenceID=1202
15:57:40 From Shana Phelps to Everyone:
Replying to “https://pnhelp.org/e…” March 28th 1Pacific 2Mountain 3Central 4Eastern
Neuropathy and Mental Health: A Patient’s Perspective
https://pnhelp.org/events/upcoming-events
All of WNA’s upcoming events can be found here. Additionally, our support groups can be found at https://pnhelp.org/support-groups
16:03:09 From Peripheral Neuropathy Support Network to Everyone:
OUR WEBSITE: https://pnsnetwork.org/
EMAIL: Pat can be reached at leader@dcpnsupport.org.
16:12:44 From Sha(w)na Phelps to Everyone:
Mayo Clinic on Healthy Aging: Add Life to Your Years and Years to Your Life
https://my.clevelandclinic.org/health/body/23273-autonomic-nervous-syste
A bit about Autonomic Nerves
16:20:38 From Glenn Ribotsky to Everyone:
Take a look at: https://neuromuscular.wustl.edu/antibody/pnimax.html
16:21:11 From Sha(w)na Phelps to Everyone:
dysautonomiA
http://www.dysautonomiainternational.org/
Neurology: a broad field
Neuromuscular Neurologist – specializes in muscle and peripheral nerve conditions
16:24:25 From Sha(w)na Phelps to Everyone:
Replying to “Neurology: a broad f…” Often easier to find at tertiary centers associated with research centers
16:27:30 From Sha(w)na Phelps to Everyone:
https://pnhelp.org/resources/practical-help
Essential Websites for Neuropathy
16:28:29 From Sha(w)na Phelps to Everyone:
https://neuromuscular.wustl.edu/index.html