@rwinney thank you so much for the positive message. Gives me so much hope. I definitely have seen progress, and at times, I’ll have 4-5 good days in a row with minimal symptoms. However, I am in a rough stretch now of 13 days where my feet keep burning and tingling and it feels like I’m back at square one. Nothing has been linear and it’s all up and down. It’s really difficult to manage on the bad days and those are the days I have trouble coping and get very down. How are you doing? Were you able to see recovery over the 2-3 year period? Thank you again for reaching out!

I was just put on B12 for the same thing you have--do you have any type of side
effect from B12?

I am so glad I joined this group. I have 2 mutations and never was good at taking vitamins as I was diagnosed young. I’d take vitamins then stop then start. It wasn’t until recently in July I started feeling pricking sensations in my hands mostly, and I talked to a good friend who also has the mutation. She told me to drink under armour waters and ditch my synthetic vitamins, so I did. Up until that point I had never had my homocysteine levels check, so my dr checked that and it was good, however she did not check my levels. Fast forward to the end of September, both feet started with what I call a vibration feeling, almost as if a blood pressure cuff had just taken my blood pressure. When I first wake up I don’t notice the buzzing at all until I get moving. My mom and sis both have neuropathy but they go to sleep and wake up with it, so I’ve been stumped as to why mine is not the same. However the last few mornings I have felt it upon waking but only in my right foot. That one seems to be the worst for me. Is this all normal?

Hi, may I ask how you are doing now did the B12 help? I'm having all these symptoms and I'm very scared. This has progressed all over my body with tingling and weird sensations of numbness. I would love to hear back from you. Thank you so much.