Polyneuropathy

[Skieblue]

so last summer 2023, I woke w severe pain I. My toes, excruciating, tried to stand, took a bit. Then a tried to walk… pain so bad in my toes. So that continued off and on, then the heels started with burning pain. Now it’s daily, I have an appt w neurologist in May 2024.

Anybody out there that has started down this road too?

Is anybody worse? Please tell me your stories so I can try to understand where this symptom may go

[Nackapan]

Have you had blood tests including b12 folate iron and vit D ?

Has your G.p ruled out what they can?

Prescribed pain relief?

[Rexz]

Hi SkieblueLooking at your profile you've been diagnosed with AMAG in 2019 and it seems you've an advanced stage including Pernicious Anemia. Can you let us know the dose and frequency of B12 you've been injecting and for how long? Also, as Nackapan stated watch the often overlooked folate.

Even with proper B12 dosage it can take months to a year for nerves to heal. My neuropathy got severely worse 6 months after I started B12 replacement therapy. One day I experienced complete numbness on the entire right side of my body. We increased my injection frequency from 1,000 mcg monthly to 2,000 mcg now SI every 4 to 7 days. Now neuropathy is mostly resolved. But even as that was healing and the numbness went away it became very painful. I describe it as having 1,000 minions stabbing me with ice picks, excruciating.

If you're not dosing enough B12 then your nerves cannot heal properly. It is also very important to exercise to get your blood flowing especially to your extremities where your neuropathy is. Remember it's one thing to get B12 into your blood but you've got to get that blood in sufficient amounts to your extremities.

Best wishes, Rexz