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Hello @kburgess, welcome to Mayo Connect. I have idiopathic small fiber neuropathy (SFPN) and polymyalgia rheumatica (PMR). Fortunately for me the SFPN only presents numbness in both legs and feet - no pain. I went for over 20 years without getting a specific diagnosis because the doctor told me they could run some tests to determine if I have nerve damage. When I asked him what could be done if it is determined to be nerve damage, he told me nothing, there is no treatment. At that time the numbness was in the toes and the bottoms of both feet so I sort of let it go. Fast forward to March 2016 the numbness is more of a concern so I met with a Mayo neurologist who diagnosed idiopathic SFPN and told me the same thing as the first doctor - there are no drugs or topicals that will make the numbness better. He said just to let him know if it's gotten any worse.

That started me on my quest for more knowledge about SFPN and autoimmune diseases in general. I ran across a book by Dr. Terry Wahls who has MS and how she used nutrition to help with her symptoms. She does have an amazing story to tell - http://terrywahls.com/about/about-terry-wahls/. I did buy her book and it got me started on eating more healthy - not saying I don't have my days though :-). The green smoothie has become my breakfast at least 4 to 5 days a week. I did find a regimen or protocol of supplements that I believe has stopped or is reversing the nerve damage in my legs. I started the supplements in Sept 2016 and then the numbness was just below the knees in both legs. It now feels like it is just above the ankles. It might not sound like much but I don't expect much because of my age (73 and still fortunate enough to be working full time from home). I still share some of your problems - have to get up slowly and watch the first few steps. The wife says I've had the old man walk since my 50s. I have the same problem after sitting or driving for awhile, have to be careful when I first stand up.

Since you are a nurse, I'm assuming you have discussed all your symptoms and concerns with your doctor. Can you share what they said if you have met with a doctor? If not, I think might be a good idea to set up an appointment and push for answers. You are definitely a step up from me with the medical knowledge and being able to explain your symptoms and I think that helps you ask the right questions and push the doctor for an answer.

Hoping you will find the answers you need...and soon!


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Replies to "Hello @kburgess, welcome to Mayo Connect. I have idiopathic small fiber neuropathy (SFPN) and polymyalgia rheumatica..."

Thank you for the information regarding the book, I will definitely check it out. Most of my conversations with my MD's, will result in same responses such as "getting older" and either link the complaints to my varicose veins, my extra weight, or think I am depressed. I actually have had 2 doctors and some of my nursing friends mention MS, but I do not recall any family members with MS. I have had varicose veins that bother me, and believe that I had Peripheral Vascular problems. But the problems walking, the numb, painful and dysfunctional feet drive me insane. I have always been energetic, and I love working. I'm not a person to sit. If nutrition will ease the symptoms, I will make whatever drastic changes I need to feel better and live a normal life.