Thanks for your response. I have been around here for a while and have followed this thread and your progress. I don't post much though because of issues with my hands. My PN goes back two years even though all tests come back normal, including three EMG's. I just did a SFN biopsy and waiting for the results.

Anyway, congrats on your success. It is inspiring and gives me hope. I need that.

Hi Beatle..

Is your PN related to alcohol abuse? Just curious, good luck with your tests and progress. What you describe above sounds, to me , a little unusual for alcohol related PN.

Thanks for your response. I have been around for a while and have followed this thread and your progress, I do not post much however due to issues with my hands. My PN goes back two years even though all tests come back normal, including three EMG's. I just completed a SSFN biopsy and awaiting the results.

Anyway, congrats on your success. It is inspiring and gives me hope. I need that right now. Has anyone else experienced improvement with numbness? I would love to know.

I am not sure if it is AL related but I think it is. I drank heavily (nightly binge) for 10 years, developed HBP first and then a couple of years later, all of the classic PN symptoms came on in my fingers and toes, rather quickly and have increased over time to hands and feet, legs and arms and now I also get tingling in my spine, groin and even facial numbness and there are days I cannot walk (like yesterday).

I've been to three neuros and have had a lot of testing including gallons of blood work, lumbar puncture, EEG, three EMG's, and two MRI's (brain and cervical spine), optic nerve checked too. They started by looking for MS but my diagnosis is currently IPN. I am 44, male, 6', 155lbs, vegan diet for the past 15 years and I workout every day. I do everything right with regards to health, except for that 10 years of the binge drinking. In retrospect, I believe I could have suffered a vitamin deficiency (thiamine or B12) due to a combo of the the drinking, vegan diet and not properly supplementing but as my neuro says, "we may never know the cause".

Hey Beatle. I'm not a neurologist, but heavy binging + no meat will almost certainly have depleted your B12 for a longer period. As you probably know vegetarians/vegans should ideally supplement on B12 as the biggest source is meat (and organs). Combined with alcohol which flushes away the B12 it could certainly have lead to PN.

Do you currently take B12 and B1 supplements, and if so, which ones? There is quite a big difference in efficiency - most here would recommend the methylcobalamin version of B12 and the benfothiamine type of B1.

I know it could still be idiopathic, but you really don't need to be a neurologist to suspect B12 deficiency here. What did your test results say (if possible, the numbers, as most docs use outdated limits)?

You might still turn this around with proper supplements.

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.

PN is scary
 

My PN is worse today. I have had no pain. I get numbness along the bottom of my feet.

I had 2 wines last night, I only wanted one, my friend ordered the other, I drank it, had one other day when I had 3-4. My body reacted. I can go for weeks without wine, do 2 a week or can drink 1/3 of a bottle. I don't think it matters how much or if one falls into the category of alcoholism. What matters is what this drug does to you.

I feel very encouraged that many have said their symptoms improved with giving up alcohol. Before I read that, my day started crazy. By mistake I made coffee with all caffenated putting me into hyper gear and my blood pressure up. I don't have high blood pressure, just with stimulants. Add on worry about the feet!! I did Reiki on myself, prayers. I was in tears. I really love wine, not to the extent of PN. I know sugar is so bad for you and inflammatory. wine is sugar. I have a cruise coming up, picturing myself drinking pomegrant juice instead of wine. Water with lemon is good.

I am very proud of all of you who have gone sober and are doing such a dynamic job of improving health. I actually don't like the feeling after 1 glass of wine. I am going to give it up. Can't say forever but just for today. Just for today I love to walk, do my food shopping and dance. These little, pretty feet are getting a pedicure tomorrow. Gotta treat these little piggies with love.

congrat.
 

I followed many of your posts. I am a retired addiction/psyc RN. You have done remarkably well. I am so happy for you. Good job.

icehouse
 

whoops, last post was supposed to be for icehouse

Thanks Leilad...!