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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
I would like to introduce myself as someone who has been living with Idiopathic Neuropathy for about 20 years. I have run the gamut with testing and several different neurologists. I've had EMG testing 2 different times with 2 different results, first no neuropathy or maybe small fiber, and just recently polyneuropathy. I really believe that vitamins, supplementation and nutrition would help. I've tried different meds but so far I'm dealing with the pain because I can't tolerate the side effects. I'll be 81 in January, and other than PIN, I'm in pretty good health. I'm wondering if anyone has had any experience as far as seeking out a professional who can help with nutritional and supplement guidance when it comes to neuropathy. The many different doctors I have seen over the years know absolutely nothing about neuropathy, that includes my Primary Care doctor, 2 podiatrists, 3 different Neurologists, and even physical therapy. One doctor told me it was called Idiopathic because the idiot doctors don't know anything about it, that made me smile. Thank you for listening. 🙂
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Hi @rosy33, I would like to add my welcome to Connect along with the other members. I also have idiopathic small fiber PN which I've had for well over 20 years (in my mid 70s now) but I only have the numbness. I didn't bother to get a diagnosis because when is started in my toes and I asked my primary care doc about it he said it was probably nerve damage and they could test for it. I said if they find it's nerve damage what can you do to fix it. When he told me nothing I said then why test for it if you can't fix it. That seems like eons ago now. When it progressed to just below the knees I started worrying and went to a neurologist who diagnosed me. Sad was I when he told me the same answer as the first doc when I asked what can you do for the numbness. He said there were no topical treatments or medications that would help with the numbness. That's when I made up my mind to learn everything I could about my condition and try to see if there was something that could help.
I have tried most every over the counter topical with zero success. Have also tried several types of TENS units with little to no success. That's about the time I found Connect which helped me immensely to know that I was not alone and learn what others have tried and what has helped them. I found a closed group on Facebook (http://www.facebook.com/groups/spnpd) and did a lot of reading about the supplements they use. I've been on them since Sept 2016 and feel that the supplements have slowed or possibly stopped the progression of the PN in my legs. When I started the numbness was just below the knees on both legs. Now it feels to be just above the ankles on both legs. They also have a website - http://solutions2pnpd.com/.