Thanks very much for your response. Now I can see how I should have supplemented back when I went vegan but at the time, it didn’t occur to me. It was more than a decade before I read something about alcohol depleting B-12 and realized I needed to take it. My PN symptoms came on quickly. One day I had numb tingling fingers and electric shocks in my hands. I went to the doctor and was told it was likely stress. But I knew that wasn’t right. I knew what stress felt like and this wasn’t it. I looked up my symptoms online and they pointed to PN. I remember thinking “at least my feet are not affected” and sure enough, within a few weeks I started to experience similar symptoms in my feet and it has just progressed since then.

I spend a lot of time waiting (mostly in bed) for the neuro visits and have educated myself about PN; something I had never heard of prior to my own experience. And I have been taking all of the support supplements for about 18 months now: B-12 (methylcobalamin), R-ALA, Benfotiamine, Metanx, Curcumin, Ubiquinol, Pantothenic Acid, D3, Biotin, fish oil.

Despite regularly taking all of the above, my symptoms have progressively gotten worse. I should also note that I no longer drink. I have had 4-6 drinks in the past two years and every time, I am stuck in bed for weeks with unbearable pain so it was pretty easy to give up but I am still in bed most of the time.

I need to communicate with others who know what I am going through. When I describe my symptoms to friends and family, I get a lot of raised eyebrows and confusion. It has been a lonely, painful, frustrating experience.