Connect
← Return to Vitamin B12 deficiency and small fiber neuropathy
Discussion
Vitamin B12 deficiency and small fiber neuropathy
Neuropathy | Last Active: Sep 10, 2023 | Replies (73)Comment receiving replies
@mikeg0822 -
Hey there, Mike. Yes, I have experience with B12 deficiency, most likely being the cause of small fiber neuropathy. Thank you @artscaping for thinking of me to help contribute.
I had begun to notice mild symptoms like racing heart and fatigue, then progressed to weakness, numbness, burning, vibrations, shocking pains, tingling and vibrations. A skin punch biopsy detected small fiber neuropathy and then it took several months after to get through a variety of testing to narrow down the underlying cause. Low B12 was the only factor that my neurologist came up with. I began weekly B12 injections for a while then every other week until blood testing showed I was within range. My doctor told me that nerves can regenerate themselves, but it may take 2-3 years.
Here's my advice...believe your doctor that you will recover. Think positive. Don't worry about woulda, coulda, shoulda, that's over. Eat a healthy diet and get proper nutrition through food. Have patience. Exercise and stay as active as possible. Find joy and distraction, and know...
You got this!
How are you doing currently? You mention making progress already which is awesome! How have you been managing symptoms?
Replies to "@mikeg0822 - Hey there, Mike. Yes, I have experience with B12 deficiency, most likely being the..."
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?
Connect
@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!