Vitamin B12 deficiency and small fiber neuropathy

There is good reason for hope in your situation, seems they caught it fairly early. Mine was not Dx'd for about a decade despite seeing 3 PCs, a cardiologist, a rheumatologist, 2 neurologists, 3 gynecologists, a carpal tunnel specialist, and 10 weeks of occupational and physical therapy with surgery scheduled for carpal tunnel. I left that clinic (TVC in Vancouver Wa) at that point and went to MDVIP. Dx'd first day there. I've made good improvements but the damage was too much. I'll never be able to rollerskate worth a💩again, which is my happy place, my blood pressure and heart rates are both in the stratosphere from autonomic damage. Balance is effed up. Walk like I'm drunk all the time. Might have to give up motorcycle and quad riding, my other happy places. Just too painful and a little dangerous bc of balance and weakness issues from the deficiency.

You're gonna get much better maybe even 100% better but don't EVER stop the b12 treatments you'll have to be on for the rest of your life. Also research folate (helpful) and be wary of b3 and b6-- do not get to much of those. If you're really really brave there is a supplement called lions mane that is supposed to help repair nerve damage, just do your research and get good quality non- contaminated lions mane.
Best of luck to you my fellow b12 warrior.

@cantab
do you have a medical condition or take medication that depletes your vitamin B12 and D?
I take vitamin D and B complex because of the seizure medication’s that I take.
Jake

I'm getting B-12 injections to keep my numbers up. Everyone should get checked for B-12 and D numbers in their system.

@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?

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?

Hello and welcome @xian121905. I'm glad you found us! Yes, inconsistencies and uniqueness of neuropathy symptoms is quite normal. Neuropathy has a variety of symptoms and each person's experience may differ. Odd, isn't it?

Very! Ever time I try and research something I find that symptoms that are the usual don’t match mine. My mom and sis have the same symptoms except mom has burning and sis does not. Mine just feels like buzzing and sometimes it feels like a pulsating sensation.