1. < Neuropathy

Just diagnosed....continue testing for causes

Posted by robge @robge, Feb 18, 2019

I was just diagnosed with neuropathy and am currently being tested to try to determine the root cause. What I know so far is that I am not diabetic, my B12 level is fine, I do not have thyroid issues, tested my inflammation levels and those were fine, and I do not have Hodgkin's Lymphoma. Testing for MS next (and I am not sure what else). They also did X-Rays of my hips and back and those were fine.

My big question for the group….I know that I have had neuropathy for several years. It began slowly and has remained about the same for years; however, lately it has progressed quickly from the balls of my feet up to my knees and also into my finger tips. Also having trouble with balance. Have others had a quick progression like that or was it more gradual? Thanks in advance.

Also, someone recommending acupuncture. Has anyone had successes there?

Interested in more discussions like this? Go to the Neuropathy Support Group.

robge | @robge | Feb 20, 2019
In reply to @artscaping "@ericvnelson, Welcome, you are in a great place to share, explore and learn about neuropathy. My..." + (show)
@artscaping

@ericvnelson, Welcome, you are in a great place to share, explore and learn about neuropathy. My only contribution might be for the numbness in your feet. I get an MFR (myofascial treatment) for my numb feet every week. I can sometimes go for two weeks but my balance, stability, and discomfort increases if I wait too long. I will just let @jenniferhunter see this as well as @johnbishop. Jennifer has all of the links for MFR and John has done a ton of practical research on the numbness aspect. I just might throw in the hand treatment that works for numbness, tingling, and the needle-like pain with which I contend every day. I never leave home without a 3:1 CBD/THC topical that works quickly and lasts a couple of hours or more. I have also used topicals compounded by a special pharmacy and on occasion, some essential oils. My first choice by far is Releaf Balm by P & B (Papa & Barkley). My best to you as you begin your Mayo Connect journey. Be free of suffering, be well and make some time to be happy. We are here for you.

Jump to this post

Thanks for this suggestion @artscaping I will look into that treatment. I read a little about essential oils and want to explore that more. Also glad to know that the CBD oil is working as well. Thanks for all your helpful suggestions. I hope you are free of suffering, well, and happy.

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Feb 20, 2019
In reply to @robge "Thanks for your reply @ericvnelson. There are a lot of similarities in our cases. I am..." + (show)
@robge

Thanks for your reply @ericvnelson. There are a lot of similarities in our cases. I am 53 and although I was just diagnosed, I have been experiencing numbness and loss of feeling in my feet for about 10 years. The numbness has progressed to my knee on my left side and my ankle on the right. Recently, I have also begun noticing numbness in my fingertips and also that the areas affected by the neuropathy are cold – severely cold and they take hours to warm up. I have also had balance issues for years, but it has gotten much worse lately. I am not as active as you, but have done yoga off and on for years and am currently working. My neurologist also suggested that I try Tai Chi and swimming. Online, I began reading about acupuncture for PN, but it seems to be mainly for the pain and I am not experiencing pain. I have also read about deleting glutens and refined sugar from your diet, but have not begun doing that. My neurologist told me that there was no treatment and told me the only thing I could do was live a healthy lifestyle – eat right, eliminate alcohol, don't smoke, exercise, and eat right. I hope you continue to be positive. For me, meditation and mindfulness help me with the positivity and the stress in my life. Agree that it is difficult to remain positive. Wish that there were more that could be done for all of us. I have not heard of egoscue, but googled it and will read up on that.

Thanks again for taking the time to reply and share your story with me. Hoping you find some suggestions that are helpful.

Jump to this post

@robge When you talked about cold parts of your body where you have neuropathy, that suggests to me that you may have decreased circulation there, and nerve compression and decreased circulation can be caused by physical fascial restrictions that can happen anywhere in the body. I have thoracic outlet syndrome that has caused my hands to turn blue and cold (actually cold to the touch), with arm pain, tingling , and numbness. I have been treating this in physical therapy with myofascial release. MFR can help so many conditions where conventional medicine hasn't helped. There can be similar issues with tight tissue in the hips and pelvic area that are similar. If your issues are physical, fascial stretching can help.

I created a discussion for MFR at https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You may want to look at that and see what you think. I have had great results with MFR. Also if you have low thyroid function, that tends to cause cold hands and feet. My feet were always cold until I took thyroid medication to assist my thyroid that was not producing enough hormones.
https://www.mayoclinic.org/diseases-conditions/hypothyroidism/symptoms-causes/syc-20350284
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

REPLY
1 reply
6969 barbie spokely in minot, nd | @6969 | Feb 20, 2019

This sounds like my daughter…except this came on all of a sudden with her lips becoming numb….no doctor in Minot knows what caused this….strange….headn to mayo mid April to hopefully get some answers and help…..will let you know what we find out…

REPLY
1 reply
robge | @robge | Feb 23, 2019
In reply to @jenniferhunter "@robge When you talked about cold parts of your body where you have neuropathy, that suggests..." + (show)
@jenniferhunter

@robge When you talked about cold parts of your body where you have neuropathy, that suggests to me that you may have decreased circulation there, and nerve compression and decreased circulation can be caused by physical fascial restrictions that can happen anywhere in the body. I have thoracic outlet syndrome that has caused my hands to turn blue and cold (actually cold to the touch), with arm pain, tingling , and numbness. I have been treating this in physical therapy with myofascial release. MFR can help so many conditions where conventional medicine hasn't helped. There can be similar issues with tight tissue in the hips and pelvic area that are similar. If your issues are physical, fascial stretching can help.

I created a discussion for MFR at https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You may want to look at that and see what you think. I have had great results with MFR. Also if you have low thyroid function, that tends to cause cold hands and feet. My feet were always cold until I took thyroid medication to assist my thyroid that was not producing enough hormones.
https://www.mayoclinic.org/diseases-conditions/hypothyroidism/symptoms-causes/syc-20350284
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

Jump to this post

Thank you @jenniferhunter I examined the link and will look into that more. I have noticed and plan to mention to my neurologist at the next appt that when I shower, the portions of my feet that I have numbness or no feeling in are actually white (a very stalk white). The portions that have feeling in them have a healthy color and are almost reddish, but the others are a stalk white. For now, my fingertips do not show this color pattern when in the shower, but the numbness has just begun in my fingertips whereas I have been experiencing numbness in my feet for several years now.

Thanks for sharing this information. I really appreciate it.

REPLY
2 replies
robge | @robge | Feb 23, 2019
In reply to @6969 "This sounds like my daughter...except this came on all of a sudden with her lips becoming..." + (show)
@6969

This sounds like my daughter…except this came on all of a sudden with her lips becoming numb….no doctor in Minot knows what caused this….strange….headn to mayo mid April to hopefully get some answers and help…..will let you know what we find out…

Jump to this post

Hope you get the answers you are looking for @6969

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 23, 2019
In reply to @robge "Thank you @jenniferhunter I examined the link and will look into that more. I have noticed..." + (show)
@robge

Thank you @jenniferhunter I examined the link and will look into that more. I have noticed and plan to mention to my neurologist at the next appt that when I shower, the portions of my feet that I have numbness or no feeling in are actually white (a very stalk white). The portions that have feeling in them have a healthy color and are almost reddish, but the others are a stalk white. For now, my fingertips do not show this color pattern when in the shower, but the numbness has just begun in my fingertips whereas I have been experiencing numbness in my feet for several years now.

Thanks for sharing this information. I really appreciate it.

Jump to this post

@robge @jenniferhunter Your description of the stark white areas of the feet are exactly like my feet. And like @jenniferhunter wrote, it is relieved with Myofascial Release (MFR). My MFR therapist also taught my partner how to relieve it at home. I still get a weekly treatment which enhances my balance and stability by getting rid of the numbness or greatly reducing it. At least I now feel safe driving and walking, Be safe and have a pain free day with healthy colored feet. Chris

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Feb 23, 2019
In reply to @robge "Thank you @jenniferhunter I examined the link and will look into that more. I have noticed..." + (show)
@robge

Thank you @jenniferhunter I examined the link and will look into that more. I have noticed and plan to mention to my neurologist at the next appt that when I shower, the portions of my feet that I have numbness or no feeling in are actually white (a very stalk white). The portions that have feeling in them have a healthy color and are almost reddish, but the others are a stalk white. For now, my fingertips do not show this color pattern when in the shower, but the numbness has just begun in my fingertips whereas I have been experiencing numbness in my feet for several years now.

Thanks for sharing this information. I really appreciate it.

Jump to this post

@robge You're welcome. Hopefully your neurologist will be familiar with this type of problem, and that therapy could help.

REPLY
View MoreView Less
Please sign in or register to post a reply.