I have always been healthy, except for some food and seasonal allergies. I am pretty active, especially so in the last 10 years. About a year or so ago, I notice my fingers were numb, especially my thumbs, but carried on without worrying about it. I assumed I was using my phone too much to text so I switched to a stylus. Three months ago, I started experiencing tingling in my hands, feet (especially at night) and numbness in my toes. I also started to react badly to cold weather and struggle to keep warm, sometimes swollen fingers if I am out too long in the cold (not related to Raynaud’s). I have had tingling in the feet on and off over the years, mostly after dancing in heels so I never worried about it but the numbness has got me concerned. Went to PCP who ran all kinds of tests for vitamins deficiency, autoimmune disease, kidney, A1C, etc, etc and all came back normal. I saw a neurologist early this week who, after doing some in-office tests such as pin pricks an measuring my response to a cold instrument, diagnosed me with Small Fiber Neuropathy (SFN). He gave me some vitamins and asked me to come back and see him in a few months. I do not have any pain and in the last three weeks, the tingling has subsided significantly but the numbness remains. I tried doing some research online but it’s universally bad news and frankly scary. It seems to suggest that it always gets worse and there are no treatment. I am scared to think of myself potentially being disabled by this. I’ve even seen scary stuff suggesting that it can involve your lungs and heart. This seems like a fairly common condition that many people live with, particularly diabetics. Do you know anyone or have you dealt with this condition to offer some advice/suggestions. This forum is a great community of people and I am on here almost daily appreciating all the wonderful contributions and felt compelled to share this. If you’d like to share your experience with SFN, could you also share your age of onset? I am 53.
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