Living with Neuropathy - Welcome to the group

@homdee3041

Vitals.com; GoogleScholar.com; Lifescripts.

These are 3 websites to refer to if you want to know a doctor's credentials and their patient reviews. I know that there are others. I, personally, tend to be skeptical about big promises.

Jim

Five years ago I was at a Conference in Washington DC and walking from the Conference Hall back into the Hotel I said to my friend, " this is beautiful carpeting. It looks just like bricks" . She looked at me and said, "Kathleen, it IS bricks" but to me it felt like I was walking on thick carpet. Welcome to Neuropathy ! But Imhad never had the usual "causes" of Diabetes, Chemotherapy etc. and looking back, I'm sure my Dad had the Neuropathy, as did my brother and now his son and NONE of us have had a precondition usually leading to Neuropathy. At this point I have increasing numbnessextending from feet up to knees, but little pain, for,which I am thankful. Since the medications offered are mostly tomdeal with the pain and have seriously us possible side affects I am on no medications but do take a variety of a Shaklee Food supplements. In order to deal ,with the increasing numbness I am serious about exercise feeling that I need those muscles . I also go weekly for massage on my feet and legs.
It seems that most of the research is for dealing with the pain. Is there anything happening with lessening the nerve loss and numbness ?

Hi Kathleen (@materk), I too only have numbness with my neuropathy. I met with a Mayo neurologist a year ago in March and was diagnosed with idiopathic small fiber peripheral neuropathy in both feet and legs to just below the knees. I also was wanting a fix for the numbness and have tried just about every topical available, a tens unit and some other over the counter stuff. Nothing worked to get rid of the numbness. So after I was diagnosed with SFPN, I asked the neurologist what can you do for the numbness. His answer was nothing, just let him know if it starts getting worse which it will over time. That appointment started my search down the non-drug treatment path. I found something that works for me but may or may not work for others. It's a specific regimen of vitamins, minerals and supplements that I found on a closed Facebook group - The Solutions for Peripheral Neuropathy Pain & Discomfort which is now a 501c3 group. I was pretty skeptical at first but I read all of their information and specific instructions which is a lot of reading and decided to give it a try. I started taking the protocol in September 2016. When I started the numbness in both legs was from just below both knees to the toes. By December 2016 the numbness had went down to just above the ankles in both feet. I haven't made any progress since last December but I'm happy with it since it means the numbness is no longer spreading upward which the neurologist told me would happen. I continue to take the supplements hoping that it will keep the numbness at bay.

The group has over 5,000 members now and there are a lot of success stories of members who have been able to taper off of the pain drugs using the natural elements in the list. The recently setup a website which make it easier to read their story and what it does for you. The group has a lot of RNs and other medical professionals that also suffer from neuropathy and are on the protocol. Here is the website if you want to check it out: http://www.solutions2pnpd.com

You can read my personal story of my search for an answer here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985
John

Darlia here.. John, I joined that group too as you'd recommended, but have not had the time to read all their required literature. I did however, see a LIVE thing being done by the Admin. He used profanity and has a very condescending personality. I had sent him a helpful message recently by PM (private message) about how to give yourself CPR. He sent me a nasty reply not to send him "this stuff" nor anyone else in his following! (I had not)
So then I responded to him to apologize for the way he felt and he literally BLOCKED me! So then I decided this is a crazy person, so I unjoined. I would BEWARE of this closed group!
Darlia

This is also expensive from what I saw

John, what specific Nutrient Supplements are you taking?

Hi Darlia, I choose to overlook the profanity even though it's not something I personally like. The protocol does work for me. I have no fear at all of the group. They are all folks in pain looking for help, finding it and wanting others to know it works for them - but they need you to read all of the documents and information so that you will know why it works and what it does. They've done that, documented it I know that their hearts are in the right place wanting to help people. They are not making money off of it and they have been able to provide a small group of people a 2 or 3 month supply of the protocol for no cost due to the generosity of other members of the group which is a program the group's leader started. I think he probably is a little impatient with some new members because he's answered the same questions a zillion times and the questions are covered in the groups documentation which a lot of new people do not want to read or just skip over it. It really does tell you why each element is part of the protocol and what it does. I'm really sorry if he was rude to you. I've had a lot of people rude to me over the years but I just chalk it off to another bad day in the neighborhood and keep going forward one step, one day at a time trying not to add to someone else's bad day.

As far as expensive, I found the total cost is a little less than 10 dollars a day once you get the complete list of items and then only have t reorder by item when you run out. Each item lasts a different length of time. I guess that could be expensive but what's the alternative. I can change my lifestyle and do without some things if the cost is the issue for me.

Hoping you find something that works for you.

John

Hi Kathleen ( @materk), The specific supplements are listed on the website for the group - http://www.solutions2pnpd.com/. The link at the top lists how to order them through Amazon but you might be able to find them locally I'm not sure. It's also important to read the instructions on the site. It has some cautions if you are taking a blood thinner. The instructions has a easier to view list of what and when to take morning, noon (biotin), and evening. The biotin needs to be taken at least 2 hours before or after the R-ALA since it affects the absorption of the R-ALA.

Thanks, I'll check them out for availability through Shaklee Sipplements that I have been taking for many years and am sure of their purity and non chemical.,

Hi, I'm new to this group. My name is Michele and I have suffered with Neuropathy issues for about 4 years now. My left hand has contractures and muscle wasting and the doctors I have been to in the Detroit, MI area can not figure out what is causing it. So here I am, a patient at the Mayo Clinic in Rochester, MN, Hoping that I find my "Dr. House". It has been a long and tiring journey from doctor to doctor, test after test, being given diagnosis after diagnosis only to be eventually told that no, I really didn't have those issues or diseases.