Small Fiber Neuropathy BOOK!

Posted by rwinney @rwinney, Aug 18, 2019

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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@rwinney

Unfortunately, it does not. However, I will say this, my Dr. (Argoff, one of the authors) told me that it is possible that nerves can regenerate but it may take may be 2-3 years. My opinion is that he was trying to comfort me with long term hope. I feel that if it can happen it may depend on the severity of your symptoms. Who knows. I also don't like be a pessimist.

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Hi .. I hope you’re feeling well and you won’t mind me asking what your symptoms were/are from SFN. I suspect I have it and scheduled a biopsy although my neurologist doesn’t feel it’s urgent . If my biopsy is positive I’ll buy the book.
Hope to hear back from you.

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@lynnaustin

Hi .. I hope you’re feeling well and you won’t mind me asking what your symptoms were/are from SFN. I suspect I have it and scheduled a biopsy although my neurologist doesn’t feel it’s urgent . If my biopsy is positive I’ll buy the book.
Hope to hear back from you.

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Hello! Don't mind at all. Definitely a progressive onset beginning 3 years ago and not being properly diagnosed until Feb of this year. Doctors and I ran in many different directions before I demanded that something was wrong neurologically. My underlying cause is B12 deficiency (I listed some more specific symptoms of B12 towards the bottom). It's a long list, here you go…

sharp sudden pain
stabbing
burning
aching
tingling
numbness
pins and needles
vibrations
topical sunburn feeling
cold/hot flush sensation
hot spots on feet
lumps under feet
restless leg
deep bone pain/aches
dizziness
sweating/freezing
exhaustion
heavy breathing
palpitations

I wish you all the best in finding a proper diagnosis. Just knowing, despite it sucking, will bring peace of mind and accountability of your symptoms.

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Thank you . I’ve had many tests this summer with no known cause for my symptoms of foot pain, achy hands, and prickly stingy forearms. EMGs were fine . Sr said he doesn’t think I have SNF because I don’t have any burning symptoms.
Will vitamin shots help you?
Thanks for replying.

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@lynnaustin

Thank you . I’ve had many tests this summer with no known cause for my symptoms of foot pain, achy hands, and prickly stingy forearms. EMGs were fine . Sr said he doesn’t think I have SNF because I don’t have any burning symptoms.
Will vitamin shots help you?
Thanks for replying.

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Your welcome. My relief currently comes from B12 injections every 2 weeks, IV Lidocaine infusions weekly, Norco 5mg, Lyrica CR and Duloxatine. I also take magnesium and liquid tumeric. I will say that it has been a work in progress and different for each person.

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@rwinney

Your welcome. My relief currently comes from B12 injections every 2 weeks, IV Lidocaine infusions weekly, Norco 5mg, Lyrica CR and Duloxatine. I also take magnesium and liquid tumeric. I will say that it has been a work in progress and different for each person.

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Yes I know . Good luck with your health. By the way .. the books title sounds so scary..I think I may be too nervous to read it . Having a lot of anxiety .
Lynn

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@lynnaustin

Yes I know . Good luck with your health. By the way .. the books title sounds so scary..I think I may be too nervous to read it . Having a lot of anxiety .
Lynn

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One step at a time. Knowledge is power, but only when you are ready.
~Rachel

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