Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@allisonsnow

@marinlastef

I found the pain rehab clinic to be very helpful for the most part some did not apply to me but you will have that when you have a program for a group that can encompass so many causes for pain

Jump to this post

Allison, do they refer you to specialists in case they think you need to see one ? Personally I don’t take a lot of meds, but I do have severe neck and back pain from nerve blocks, I’m hoping they can come up with some solutions ‘cause the pain is more than I can handle.

REPLY

I don't take any suplements…maybe i should

Liked by marystefy

REPLY

tried stem cel transplant…no luck

Liked by marystefy

REPLY
@kruppm

tried stem cel transplant…no luck

Jump to this post

If you don’t mind can you disclose the clinic , to cross it from our list .

REPLY
@kruppm

tried stem cel transplant…no luck

Jump to this post

northwestern, chicago

Liked by marystefy

REPLY
@kruppm

tried stem cel transplant…no luck

Jump to this post

Did you see Dr Burt for the treatment ?
Or how did you make them treat you with it ? Did you have to pay from your own pocket ? Asking because I’m from Chicago as well .

REPLY
@marinelastef

Hello @allisonsnow , thank you for answering. Can you be more specific regarding the program ? What do you mean by some did not apply to you ? I want to make sure that I’ll be prepared for this program . It’s my only hope . Thank you so much again !!

Jump to this post

@marinelastef ,
Don't worry !!! I met some incredible people there, patients and teachers/Dr.s, nurses etc. All I meant by that was that a lot of the physical therapy was aimed more for back and neck and at that time my back was not a problem (boy how times change) Overall was a very good experience. For me it was expensive I don't know how it is set up now but then? 30 days out patient = 30 days in hotel

I really hope it helps you out! No one deserves to be in pain all the time.

remember I was there several years ago but then…the did physical and occupational therapy, they had an exercise program, they dealt with mental issues tied to pain, breath control to learn to not focus on pain, they had the neatest computer game to learn this! group sessions (small groups) to learn from each other. I can't remember for sure but seems to me there was a work book to go thru and to reference when we got home.

Good Luck
Allison

REPLY
@allisonsnow

@marinlastef

I found the pain rehab clinic to be very helpful for the most part some did not apply to me but you will have that when you have a program for a group that can encompass so many causes for pain

Jump to this post

@marinelastef I am sure they would

Liked by marystefy

REPLY
@marinelastef

Hello @allisonsnow , thank you for answering. Can you be more specific regarding the program ? What do you mean by some did not apply to you ? I want to make sure that I’ll be prepared for this program . It’s my only hope . Thank you so much again !!

Jump to this post

Thank you for being so detailed regarding my concerns, I can’t wait to see what they can do for me !! Good lock with your appointment as well .

REPLY

Hi my name is don and i have toxic neuropathy.i am using a product called rebuilder 300. . Does anyone have experience with this

Liked by marystefy

REPLY
@dwb111060

Hi my name is don and i have toxic neuropathy.i am using a product called rebuilder 300. . Does anyone have experience with this

Jump to this post

Hello Don @dwb111060 — Welcome to Connect. I have idiopathic small fiber peripheral neuropathy and have not tried the Rebuilder product but I have tried a Zopec DT 1200 which also purported to help neuropathy but after about 6 weeks of using is 30 minutes twice a day I found no real help. I can say that maybe one or two days my feet felt a little better but that could have been something other than the device. I only have the numbness with my PN so others may have different experiences. I can tell you there a lot of people with neuropathy and a lot of companies selling stuff that may or may not help you so you have to do your own research. Here is an article I found about the device from 2008 on the ScienceBasedMedicine.org website.

Recognizing Dubious Health Devices
https://sciencebasedmedicine.org/recognizing-dubious-health-devices/

Here are some other sources for evaluating a treatment or device.

Quazar's guidance about avoiding scams and snake oil cures
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's HEALTH FRAUD PAGE
https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

John

Liked by marystefy

REPLY

Hi All,
I too, am dealing with idiopathic small fiber neuropathy/autonomic neuropathy and was diagnosed after 4 years of doctors and specialists who could not fit the pieces together. BIG shout-out to Caitlin Castellot, NP, who pointed me in the right direction, and to Peter Novak, MD, PhD, for the right testing and the definitive diagnosis. And thank you to the curators and contributors of this forum who help to put this "new normal" into perspective.

My question is – Has anyone here had success applying for Social Security Disability?

REPLY

Yes. Need support of neurologist, internist and for me a psychologist.

REPLY
@elizabej

Hi All,
I too, am dealing with idiopathic small fiber neuropathy/autonomic neuropathy and was diagnosed after 4 years of doctors and specialists who could not fit the pieces together. BIG shout-out to Caitlin Castellot, NP, who pointed me in the right direction, and to Peter Novak, MD, PhD, for the right testing and the definitive diagnosis. And thank you to the curators and contributors of this forum who help to put this "new normal" into perspective.

My question is – Has anyone here had success applying for Social Security Disability?

Jump to this post

Hello @elizabej — Welcome to Connect. I posted this information in another post for a member but I haven't heard if they were able to file for disability.

Foundation for Peripheral Neuropathy – Getting Help for Peripheral Neuropathy Social Security Benefits
https://www.foundationforpn.org/2016/05/08/5217/

SSI Resource Center – Facts about Peripheral Neuropathy and Filing for Disability
http://www.ssdrc.com/ssd-peripheral-neuropathy.html

DisabilitySecrets.com – Getting Social Security Disability for Peripheral Neuropathy
https://www.disabilitysecrets.com/social-security-disability-neuropathy.html

@elizabej have your doctors suggested anything for treatment? I'm tagging @darlia since she originally asked the same question in an earlier post. @darlia were you able to file for SSA disability?

John

REPLY

Thank you @johnbishop for the resources and prompt reply!
It was explained to me that because the cause is unknown, the suggested treatments focus on alleviating the symptoms:
– Pyridostigmine (Mestonin) – for muscle weakness
– coffee and/or ibuprofen before meals – to counteract postprandial hypotension
– Midodrine – to counteract low BP
– Low-dose aspirin – to counteract blue fingertips
– Physical therapy & acupuncture
– Propranolol – to lower high BP
– Gabapentin – pain management
Most of these have been discontinued but I'm still on a low dose of Gabapentin, aspirin, and physical therapy. I sit when the BP is low, & stand when the BP is high. Small low-carb meals. Trying to mitigate some of the autonomic dysfunction too.

REPLY
Please login or register to post a reply.