Living with Neuropathy - Welcome to the group

@mandyschneider0 - your reply, mineral and vitamin shots in between your feet and hands

Thank you for responding and sharing what has made improvements to your neuropathy. You post is the only example that I have heard in Connect that has found a treatment plan that is showing improvements. I would like to learn more from your experience. I like to know things like:
- What clinic are you getting your treatments at?
- Over what period of time have you received your treatments?
- Are you measuring the degree of neuropathy you had experienced against your current experience?
- Do you expect continued improvements?
- Is there a website or other reference information available that explains the treatment plan you are receiving?
- Have you determined what what caused your neuropathy, and has it been resolved?

I believe your experience will provide some hope & benefit to others.
Thank
@cshowers

Wonderful set of questions to ask. I am also MOST interested in this approach...a new one to me. I have tried everything else.

Hi anniemae,

I've probably said this far too many times, but...... My Neuropathies are all 'idiopathic' and there are many. And I continue to ADD neuropathic conditions as times goes on, alas.

In many cases Neuropathy is a condition that occurs frequently with Autoimmune Disorders. In autoimmune disorders the Immune System allows autoantibodies to attack the organs/systems of the body, causing damage. There are over 100 autoimmune disorders, with Lupus, Rheumatoid Arthritis, Sjogren's, Multiple Sclerosis, and Psoriasis, to name a few.

In MY CASE, I do not have the autoantibodies involved with autoimmune conditions. However I do have an Immune Disorder, Primary Immune (or Antibody) Deficiency Disorder. This means my Immune System is lacking in some of the antibodies that protect me from disease. So I have infusions every four weeks (IVIG) of gamma globulin to add to my immunity. Now I don't get sick all the time.

So why do I have neuropathy? My Duke Immunologist, who studies and treats many people with my Immune Deficiency says: We use the tests we HAVE, not the tests we NEED. So there isn't a test to established WHY I have Neuropathy. But she believes, after her study of my Immune Disorder, that my Immune System allows Cytokines (a normal part of the immune response against outside attacks) to attack my own body, causing my neuropathies.

So my own body is causing my neuropathies. There is no cure and no real treatment. I have had every single genetic test and all genetic disorders have been ruled out , I have had a spinal tap to rule out MS, I am NOT diabetic, I have no chemical exposures, and I'm not an alcoholic. I have NO vitamin deficiencies at all.

My Duke Immunologist believes that perhaps some day a genetic correlation will be found, but probably not soon.

It is very hard to have chronic conditions. Not only do we not know what is going on, but most of our friends and family are completely baffled and perhaps impatient with something that cannot be diagnosed and cured NOW.

Regards, ElaineD

Another really terrific piece of info!!!!! I've been diagnosed positively with small fiber polyneuropathy and ANA. I've been taking hydroxychoroquine and azathioprine to 5 month and the numbness has continued up my body and the existing numbness has gotten worse.
Insurance won't cover IVIG and I can't afford it. The rheumatologist and the neurologist don't know what else to do. DO YOU OR ANYBODY HAVE ANY SUGGESTIONS? I HAVE ABSOLUTELY NO PAIN. I HAVE ONLY NUMBNESS. Thanks bunches to you John and everybody else!
Rose

Hi @geegie, Both @artscaping and @jenniferhunter have talked about Myofascial Release Therapy for pain and I think it may also help with numbness but I'm not sure. Jennifer has a really good post explaining it here: https://connect.mayoclinic.org/discussion/just-diagnosed-2/?pg=2#comment-268697.

I'm in the process of looking at it myself but it's not to the top of my priority list yet.

John

@geegie, @johnbishop Just following up on the benefits of Myofascial Release Therapy. This treatment works for pain and numbness. Depending on your level of pain and degree of numbness you may choose the frequency that is best for you. I was facing not being able to drive because of the numbness. And my balance was frequently a little shaky. MFR is the only thing I have found that, with regular treatments, makes a huge difference in my quality of life.

Hi Chris is this therapy benefit for the head and the pain that goes with it or is this is a benefit for the normal neuropathy of the hands and feet because I was wondering.

@mandyschneider0 I just had a session to relieve jaw and neck pain. She worked both inside my mouth and outside along the facial bones. While there, she also treated my feet for numbness and my hands for that needle-like pain created by small fiber neuropathy. I feel immeasurably better and will be able to tackle the day tomorrow without fighting painful and disturbing symptoms. I think @jenniferhunter has listed several links to more information about Myofascial Release Therapy. Perhaps she would have a minute to share them with you. Or you can read her posts on her profile. She has lots of great information. Have a lovely sleep.......and a great day tomorrow. Chris

@artscaping @mandyschneider0 I created a new discussion this morning to collect a lot of information about the benefits of Myofascial Release. Here is the link.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/?pg=1#comment-271184

Thank you so much for the helpful information it is very insightful.