Small Fiber Neuropathy and Vitamin Deficiency

Have you had blood tests for vitamin deficiencies? I’d get those before you start taking them. Also, have you had EMG, MRI or an evaluation by a neurologist?

Neurologists tell me they can do nothing for me. I need to have an MRI though.

My neurologist says there is hope and I may recover. I suppose it depends on what the cause is. That’s why I’m glad I got a second neurologist opinion. The first one said there wasn’t a problem! He was wrong.

What was the problem if I may ask? Was it a deficiency?
Thank you.

Yes, I had Vitamin B12 deficiency that had been undertreated months earlier. He ordered 1000 mcg daily, indefinitely. It’s helping with some symptoms. (I also had muscle twitches, rashes, tingling, numbness). Of course, I was also diagnosed with Post Covid syndrome…..so…differentiating what caused what is difficult. I’m not sure I’ll ever know for sure. Things are improving.

@kfrenc04
Did you have your neurologist test you for small fiber neuropathy with a skin punch biopsy? Did they do extensive neuropathy bloodwork? Did they do EMGs/nerve conduction studies? If not, you need a new neurologist who will really listen to your symptoms and test you to get to root cause. Depending on your symptoms, you may need a brain MRI.

I have idiopathic small fiber/peripheral neuropathy and was tested with the punch biopsy which confirmed it. My neuropathy started in my feet with burning/pins and needles, then it traveled up my legs (worse at night and had restless leg syndrome). I have had muscle cramps in my calves.

I was iron deficient at this time so this was addressed and I started to take alpha Lipoic acid, acetyl l carnitine, magnesium, vitamin b12, vitamin d (mostly vegetarian, don’t each much meat and don’t get much sun). My neuropathy symptoms have improved. The most important thing is to try to get to root cause and treat the underlying cause. Once nerves are damaged,

@kfrenc04
(Continued from last message)
Once nerves are damaged, they may not be able to regenerate. Some do. My neurologist told me there is no cure for small fiber neuropathy. This is why it is so important to get to the bottom of the cause. Some neuropathy is caused by drinking alcohol, smoking doesn’t help blood flow/oxygen to nerves, toxins or medications may cause neuropathy, chemotherapy can cause it, diabetes or pre-diabetes/metabolic syndrome may cause it, etc. Eating a healthy diet and taking supplements that support nerve health can help. Exercise and increasing oxygen flow in your body may help.

@kfrenc04
You may also want to get some bloodwork done to look at autoimmune inflammation/autoantibodies to see if this is behind any of your symptoms. You may need to see a rheumatologist for comprehensive bloodwork. Small fiber neuropathy could be caused by your body attacking your nerve cells.

Good luck advocating for yourself and getting the right doctors, diagnoses and treatments.

I also have small fiber peripheral neuropathy that affects my feet. I had tried so many medications and other modalities without relief. I recently got a second opinion and this neurologist started me on Nortripyline starting at 10mg increasing weekly by 10mg to 50mg. My pain level is now very low. My pain before had me taking Lyrica 200mg TID, Voltaren Gel QID, Tramadol 50mg q6hours. Now I only use the Gel maybe twice a day, the Tramadol once or twice a day and I continue taking Lyrica at the same dose but I'm hoping to back off. I'm also taking B12 injections.
This has worked for me. It might work for you.

Thank you