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?

@mandyschneider0

It's mineral and vitamin shots in between your feet and hands. Then they put suction cups on where it hurts. Which puts a electrical current like a vibration in through nerves. It takes up to 25 treatments. In my case it only took 10 because I young. The clinic also takes Medicare and Medicaid.

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@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

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@crshowers

@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

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

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@anniemae

John, thank you for this information. I have had several tests so will look this information up. Anniemae

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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

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@johnbishop

Hi @anniemae, you mentioned earlier that you were diagnosed with idiopathic progressive neuropathy. Idiopathic means that they could not determine the cause of your neuropathy when they did the testing. Mine is also idiopathic (small fiber peripheral neuropathy). The neurologist told me it was most likely hereditary and I think he's correct. I've been corresponding with a cousin who has it and I'm pretty sure my sister who passed away a few years ago also had it. This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

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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

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@geegie

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

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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

Liked by teetee7

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@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.

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@artscaping

@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.

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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.

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@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

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@artscaping

@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

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@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

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

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Treatments last me a long time when I get them and the website is Oklahoma neuropathy clinic . Com like I said the treatment usually last about 26 treatments. The symptoms go away after the treatments. Sometimes you need what I called maintenance which means when the two treatments amount in case symptoms start to come back. So this procedure best procedure works in my opinion.

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Thank you for the welcome for this group. I have joined a few other groups as I am perhaps at the beginning of discovering exactly what all my symptoms add up to a finite diagnosis. Frustrated with the seemingly network of local docs lining me up with protocol tests and ambiguous answers.

I am a 64 yr old female, not overly active life style, now work part time, most recent struggle with some emotional trauma, and have been taking antidepressants and anti anxiety meds for several years. Over the past 5 years I have presented myself to my PCP with assorted complaints and looking for help and answers to persistent and variable pain and discomfort. His solution has always been let’s run bloodwork, CBC/Chem profile. Results have been mostly within range. Went thru two courses of mild shingles with this dr also within the last several years. Have been in enough pain and discomfort to go to local ER for some kind of explanation and relief. Tests come up ok, get sent home….follow up with your PCP. Last year after feeling very ill, exhausted, painful, and disoriented return to ER, tests run all ok, go home. After a week with nothing but feeling worse and more intense discomfort finally diagnosed with shingles again from a more observant female ER doc and Gyn on staff. That ran its course over a few weeks. This past fall I again went to my PCP complaining of random pain and discomfort in arms, lower back, more general,bloodwork. Following week on a Sunday in so much discomfort go to Immediate Medical Care and this doc suspects I have neuropathy and sends me home with Gabapentin and to follow up,with PCP. See him next day and snap he’s interested at last in hearing all my complaints of extended muscle pains in areas such as jaw, neck, lower back, both sides shoulders, arms, rib cage all the way around, inside knees, thighs, restless legs, general misery and I am frantic, impatient and angry.
Oh he thinks now after years of waiting for him to say it, you must have fibromyalgia but let’s run more blood to rule out other things….Lyme, lupus, RA, and other autoimmune disorders. They all came up somewhat in the normal range except a little elevation in inflammation markers. However, one test showed a high M spike and i had the fun part of seeing the Hemotologist next to rule out myeloma, short story is happily no multiple myeloma, but MGUS, which we have to keep an eye on. The by product of the bone marrow biopsy is a chronic stabbing nerve pain that radiates from the site where he punched my Iliac crest and down my leg. It grabs me so badly sometimes that my knee buckles. He doesn’t understand why so referred me to a neurologist which I will see next month.
Sorry to go on and on but it really is the first time I have sat down to play this all out into text. Now I am in the midst of figuring out which medications are truly going to benefit me, I am up to 600 mg Gabapentin 3x a day.
Doesn’t always help, so PCP had me try off label use med Nuedexta to add to the Gabapentin,after a week when the dose was increased I realized it was not for me since it put me into a trance like state. Now I am possibly going to try Lyrica in the next day or two and discontinue The Gabapentin. Overall for the “fibromyalgia” and fog some days are awful, some medium, and just had a few good days which bottomed out this morning. Do I really have fibromyalgia or can it all be something else? Any suggestions on which road to try next? I am changing to a new PCP next month to start fresh. I have been going to Physical Therapy every week for a few months for my muscular pain and trying some strength exercises but when I slide down again, she has to work on my muscles again.
Today has been a very frustrating day and I’m glad to have this Mayo Clinic resource to start a discussion and get your feedback. Thank you, thank you.

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@et1054

Thank you for the welcome for this group. I have joined a few other groups as I am perhaps at the beginning of discovering exactly what all my symptoms add up to a finite diagnosis. Frustrated with the seemingly network of local docs lining me up with protocol tests and ambiguous answers.

I am a 64 yr old female, not overly active life style, now work part time, most recent struggle with some emotional trauma, and have been taking antidepressants and anti anxiety meds for several years. Over the past 5 years I have presented myself to my PCP with assorted complaints and looking for help and answers to persistent and variable pain and discomfort. His solution has always been let’s run bloodwork, CBC/Chem profile. Results have been mostly within range. Went thru two courses of mild shingles with this dr also within the last several years. Have been in enough pain and discomfort to go to local ER for some kind of explanation and relief. Tests come up ok, get sent home….follow up with your PCP. Last year after feeling very ill, exhausted, painful, and disoriented return to ER, tests run all ok, go home. After a week with nothing but feeling worse and more intense discomfort finally diagnosed with shingles again from a more observant female ER doc and Gyn on staff. That ran its course over a few weeks. This past fall I again went to my PCP complaining of random pain and discomfort in arms, lower back, more general,bloodwork. Following week on a Sunday in so much discomfort go to Immediate Medical Care and this doc suspects I have neuropathy and sends me home with Gabapentin and to follow up,with PCP. See him next day and snap he’s interested at last in hearing all my complaints of extended muscle pains in areas such as jaw, neck, lower back, both sides shoulders, arms, rib cage all the way around, inside knees, thighs, restless legs, general misery and I am frantic, impatient and angry.
Oh he thinks now after years of waiting for him to say it, you must have fibromyalgia but let’s run more blood to rule out other things….Lyme, lupus, RA, and other autoimmune disorders. They all came up somewhat in the normal range except a little elevation in inflammation markers. However, one test showed a high M spike and i had the fun part of seeing the Hemotologist next to rule out myeloma, short story is happily no multiple myeloma, but MGUS, which we have to keep an eye on. The by product of the bone marrow biopsy is a chronic stabbing nerve pain that radiates from the site where he punched my Iliac crest and down my leg. It grabs me so badly sometimes that my knee buckles. He doesn’t understand why so referred me to a neurologist which I will see next month.
Sorry to go on and on but it really is the first time I have sat down to play this all out into text. Now I am in the midst of figuring out which medications are truly going to benefit me, I am up to 600 mg Gabapentin 3x a day.
Doesn’t always help, so PCP had me try off label use med Nuedexta to add to the Gabapentin,after a week when the dose was increased I realized it was not for me since it put me into a trance like state. Now I am possibly going to try Lyrica in the next day or two and discontinue The Gabapentin. Overall for the “fibromyalgia” and fog some days are awful, some medium, and just had a few good days which bottomed out this morning. Do I really have fibromyalgia or can it all be something else? Any suggestions on which road to try next? I am changing to a new PCP next month to start fresh. I have been going to Physical Therapy every week for a few months for my muscular pain and trying some strength exercises but when I slide down again, she has to work on my muscles again.
Today has been a very frustrating day and I’m glad to have this Mayo Clinic resource to start a discussion and get your feedback. Thank you, thank you.

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Hello @et1054, Welcome to Mayo Clinic Connect. Thank you for sharing your symptoms and story. It sounds like you've been through the wringer with your PCP and docs. You mentioned you are changing to a new PCP next month to start fresh. @roch shared some great tips here on how to get off to a best start with a new specialist in another discussion that may help you prepare for your upcoming appointment:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

Mayo Clinic has some information that may help you answer your question about fibromyalgia.

Fibromyalgia: Understand the diagnosis process
https://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia-symptoms/art-20045401

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@sallymagint

Thank you Colleen and John, I’m hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it’s a team approach and I’m a vital player. It’s not easy, in fact it’s damn hard a lot of the time and some days I wonder how I’m going to get through it but I don’t have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I’m in the process of undergoing treatment with neurosurgery planned in the not to distant future. It’s hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There’s no guarantees and it’s still a long road to travel but I’m crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven’t delved into it too much due to the complexity, it’s helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I’ve been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you’re made to feel it’s in your head. But I’m not giving up, I can’t give up and through perseverance I’ve found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

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Hello 👋 I am from Australia 🇦🇺 and have just started on this journey of discovery. This week I learnt a bit about what is happening. Still in shock, and not wanting to believe it. I hope 🤞 I will hear from you if not I do understand. I am living in QLD Thanks Teresa

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@quiteachiver75

Hello 👋 I am from Australia 🇦🇺 and have just started on this journey of discovery. This week I learnt a bit about what is happening. Still in shock, and not wanting to believe it. I hope 🤞 I will hear from you if not I do understand. I am living in QLD Thanks Teresa

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Welcome to our group. The land of Oz is certainly at the right place to get help. Can you tell us a little more of your diagnosis. Do you have a cause? It is distressing to know you have neuropathy but it is something we have all dealt with. Looking forward to getting to know you and your condition more.

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