Small Fiber Neuropathy BOOK!

Posted by rwinney @rwinney, Sun, Aug 18 11:40pm

Sorry for not thinking of this sooner to share with all of you. My neurologist Dr. Charles Argoff from Albany Medical College, NY collaborated on a book with other Drs (some from Mayo Clinic) called
SMALL FIBERS, BIG PROBLEMS
A comprehensive patient guide to small fiber neuropathy. He mentioned it to me when I was first diagnosed with SFN this past February. It was written in 2017 due to the growing numbers of patients suffering from the disease.

After my fast and furious internet research had become confusing, I ordered the book from Amazon. It is such a simply stated tool in understanding SFN. I referred to it quite often in the early stages and it helped justify alot of what I was feeling. It helped me and I hope it can help you too!

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Hi @rwinney, Thanks for sharing this resource. I see that one of the authors is Dr. David Walk. I have heard him speak several times at meetings of the Minnesota Neuropathy Association. He is an excellent speaker and I found his talks very interesting. I miss that the MNA no longer holds meetings 🙁

David Walk, MD, Associate Professor, Department of Neurology, University of Minnesota
https://www.health.umn.edu/people/experts/david-walk-md

I will have to order a copy! Here's a link for the paperback edition on Amazon:
https://www.amazon.com/Small-Nerves-Big-Problems-Comprehensive/dp/B07K6Z1YCN/

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@johnbishop

Hi @rwinney, Thanks for sharing this resource. I see that one of the authors is Dr. David Walk. I have heard him speak several times at meetings of the Minnesota Neuropathy Association. He is an excellent speaker and I found his talks very interesting. I miss that the MNA no longer holds meetings 🙁

David Walk, MD, Associate Professor, Department of Neurology, University of Minnesota
https://www.health.umn.edu/people/experts/david-walk-md

I will have to order a copy! Here's a link for the paperback edition on Amazon:
https://www.amazon.com/Small-Nerves-Big-Problems-Comprehensive/dp/B07K6Z1YCN/

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Hi John
Thanks for adding the link! I posted late last night because I couldnt sleep as usual. My mind wanders during that time and it was like a light bulb went off that I had yet to post this info. Hands were in awful pain so I rushed through it. I hope you enjoy the read. Thanks again!
~Rachel

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I have both large and small fiber neuropathy, What do you recommend for pain? and can someone share with me what symptoms I can expect. The neuropathy is not bad, just a little in my toes. I have leg pain especially at night. I am taking Gabapentin 300 mg one in the morning and three at night., most recently Tramadol and Robaxin to take with severe pain only. I am also taking probiotics since I have ask for something more natural. Can anyone suggest anything else and advise me as what to expect as the disease progresses? My daughter was recently dx with small FN. how are these two different.? Thank you in advance. Jeanie

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Hello Jeanie @jeanie26, I don't have pain with my small fiber peripheral neuropathy. I just have numbness and there's not much that helps with that. I plan to try Myofascial Release Therapy as soon as I can find a therapist close to me. I think that may help some but I don't know. I shared my story and what has helped me in a post earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985. You might want to join the following discussion to learn what others have shared that helps them:

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Also, here is the discussion on Myofascial Release Therapy which others have also recommended:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I would recommend that you learn as much as you can about your condition. Here is a series of short videos by Matthew B. Jensen, Assistant Professor of Neurology, University of Wisconsin — Introduction to Neurology: Level 1 that can give you a better understanding of the different conditions:
https://www.youtube.com/channel/UCJaXGRxxjnF2mvLiOFmmHLQ

Liked by Lisa Lucier, sherryw

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@jeanie26

I have both large and small fiber neuropathy, What do you recommend for pain? and can someone share with me what symptoms I can expect. The neuropathy is not bad, just a little in my toes. I have leg pain especially at night. I am taking Gabapentin 300 mg one in the morning and three at night., most recently Tramadol and Robaxin to take with severe pain only. I am also taking probiotics since I have ask for something more natural. Can anyone suggest anything else and advise me as what to expect as the disease progresses? My daughter was recently dx with small FN. how are these two different.? Thank you in advance. Jeanie

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Hi Jeanie, I have SFN in my feet and hands, gabapentin at night allows me to sleep and holds off most of the pain during the day. I also take R-Ala, magnesium, vit. D, C and an Omega 3 liquid which I think helps prevent the progression and pain. Best of luck to you and your daughter.

Liked by sherryw

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@helennicola

Hi Jeanie, I have SFN in my feet and hands, gabapentin at night allows me to sleep and holds off most of the pain during the day. I also take R-Ala, magnesium, vit. D, C and an Omega 3 liquid which I think helps prevent the progression and pain. Best of luck to you and your daughter.

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I am taking almost the same medications.

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@jeanie26

I have both large and small fiber neuropathy, What do you recommend for pain? and can someone share with me what symptoms I can expect. The neuropathy is not bad, just a little in my toes. I have leg pain especially at night. I am taking Gabapentin 300 mg one in the morning and three at night., most recently Tramadol and Robaxin to take with severe pain only. I am also taking probiotics since I have ask for something more natural. Can anyone suggest anything else and advise me as what to expect as the disease progresses? My daughter was recently dx with small FN. how are these two different.? Thank you in advance. Jeanie

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Did your doctor(s) give you any explanation as to possible causes of your neuropathy? Is genetics a factor since your daughter has it? I wonder what your daughter's age range is if the doctors did not give you an explanation for it. What about environmental risk factors? Dental work or other toxic exposure? I wonder what's going on. There doesn't seem to be much curiosity about neuropathy on this board except for the most obvious source for large fiber which is diabetes.

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Diabetes does seem to be the leader along with idiopathic neuropathy. My cause is B12 deficiency.
More than just pain, burning, numbness and tingling I also experience palpitations, exhaustion, and shortness of breath. I dont hear much about the later symptons and wonder who else experiences them. B12 injections have helped me level out but still not normal. Dr says it too is part of SFN but, I don't recall seeing anyone speak of these symptoms. Also, my pain is throughout my body at an agressive rate with my legs now limiting me to walk and drive. I do appreciate the info shared through the forum about slowing progression down. Thank you.

Jeanie ~ the book I have recently referenced deals with large fiber as well and I hope it along with the links that are being referred to you can help ypu and your daughter.

I wonder if anyone in the forum has experienced small fiber turning into large fiber and what the progression of time was between. Obviously realizing that we all progress differently, I'm interested anyway. There is alot to think about going forward.

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So what did the Dr. say caused your vitamin B12 deficiency? Are you vegan? Have you had gut issues? What age range are you in? Have you been exposed to pesticides like Roundup, toxic metals, amalgam fillings, a lot of vaccines, a lot of fluoroquinolones like Cipro of Levaquin?

Posters need to help us identify the most common causes of neuropathy by asking their doctors for likely causes as well as indicating if any of the above may be a factor in your case.

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@jager5210

So what did the Dr. say caused your vitamin B12 deficiency? Are you vegan? Have you had gut issues? What age range are you in? Have you been exposed to pesticides like Roundup, toxic metals, amalgam fillings, a lot of vaccines, a lot of fluoroquinolones like Cipro of Levaquin?

Posters need to help us identify the most common causes of neuropathy by asking their doctors for likely causes as well as indicating if any of the above may be a factor in your case.

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No vegan, no toxin exposures, no gut problems, normal vaccinations, no meds you mentioned. I went to a gastro Dr last week and am waiting on 5 more blood draws to look deeper into possibilities. My neurologist did a 4 month thorough workup on me but he can't answer why my b12 was low. I want to know and understand in case there is something hereditary I should be aware of for my children's sake. The gastro Dr literally admitted that I was making him "really think" due to my questions. There are many tests going forward but am starting with blood.

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@jager5210

Did your doctor(s) give you any explanation as to possible causes of your neuropathy? Is genetics a factor since your daughter has it? I wonder what your daughter's age range is if the doctors did not give you an explanation for it. What about environmental risk factors? Dental work or other toxic exposure? I wonder what's going on. There doesn't seem to be much curiosity about neuropathy on this board except for the most obvious source for large fiber which is diabetes.

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Jager, thank you for your reply, The Dr. has not given me and cause for my SFN, My daughter is 53 years old. Genetics can and do play a roll in developing the disorder but is only about 5 % to blame, for the most part SFN is still a mystery. There is so much more to learn about this disease. While research is ongoing, for those of us who have it, the results can't come soon enough. I was borderline diabetic for years(5) with an A1C never over 6, I took Metformin for about 5 years till my A1C came back under 6 and I was having episodes of hypoglycemia so the Dr took me off the med all together and I've been fine, so I have to question diabetes as the sole cause of Lg Fiber Neuropathy.. When I ask what the cause was, I was told it could be this or that , in other words they don;t know what caused it. As for environmental risk factors, the only one I would know of is that I smoke and so does my daughter which doesn't help I am sure, but is not the cause.. All my lab work comes back fine as does my daughters. Guess we will just have to wait and see. thanks again for your reply, God Bless, Jeanie

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Well, God Bless you and your daughter to Jeanie. It is a terrible disease seeking a cause(s). I'm amazed at the different approached doctors have tried with people who post on this site. Nothing seems to work well. John Bishop, the site moderator, has reported success with his approach which, sadly, I have not explored yet due to pressing demands on my time at the moment but I will soon as I've exhausted all other approaches. Thanks for your reply.

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@rwinney

Diabetes does seem to be the leader along with idiopathic neuropathy. My cause is B12 deficiency.
More than just pain, burning, numbness and tingling I also experience palpitations, exhaustion, and shortness of breath. I dont hear much about the later symptons and wonder who else experiences them. B12 injections have helped me level out but still not normal. Dr says it too is part of SFN but, I don't recall seeing anyone speak of these symptoms. Also, my pain is throughout my body at an agressive rate with my legs now limiting me to walk and drive. I do appreciate the info shared through the forum about slowing progression down. Thank you.

Jeanie ~ the book I have recently referenced deals with large fiber as well and I hope it along with the links that are being referred to you can help ypu and your daughter.

I wonder if anyone in the forum has experienced small fiber turning into large fiber and what the progression of time was between. Obviously realizing that we all progress differently, I'm interested anyway. There is alot to think about going forward.

Jump to this post

Hi, @rwinney@johnbishop may be aware of whether any others have mentioned experiencing small fiber turning into large fiber and what the progression of time was between.

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@lisalucier

Hi, @rwinney@johnbishop may be aware of whether any others have mentioned experiencing small fiber turning into large fiber and what the progression of time was between.

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Thank you Lisa.
~Rachel

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@rwinney

Thank you Lisa.
~Rachel

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Hi Rachel @rwinney, That's really a good question but I'm not sure of the answer. I think it's possible to have both small and large fiber neuropathy together but the only reference I could find was related to diabetic neuropathy.

Small- and Large-Fiber Neuropathy After 40 Years of Type 1 Diabetes
https://care.diabetesjournals.org/content/36/11/3712

The Neuropathy Commons website has one of the better overviews of neuropathy that may be helpful.
https://neuropathycommons.org/neuropathy/neuropathy-overview

John

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