perapherial neuropathy and low b12????

[momma2494]

Hi all,

My doctors have said that I have low B12 (225) and that is what is causing my numbness, tingling and burning in my feet, legs, hands and arms.  More on my left side than right.  I have been taking the B12 shots for 4 months now and last week my neuropathy issues got worse!  Neuro Dr. said take the shot 1x a week for a month instead of 1x a month and my primary dr prescribed neurontin to ease the burning.  

My question is does this all seem normal?  I mean, my levels are not below normal but are low so can I have the issues that I have with that?  Everything that I read on PN says I have more than just normal PN since I get the burning with it and now it is spreading/getting worse while being treated?  I have also started taking an antidepresant because of the stress from all this.  Should I just go with what the Dr's are saying or find 2 new dr's and start over?  T

Thank you!!!

[mangosucker]

There is an excellent book called, Could it be B12.  I highly recommend it.

I've had numbness in my face, arms, and legs for 20 years and no one could figure out what was causing it (more so on my right side).  About 10 years ago, I started  developing overwhelming fatigue.  Then I started having severe muscle and nerve pain and muscle weakness for the last 3 years.   I finally asked them about my B12.  My level has gone from 265 to 202 in the last 8 years (I have no record of being tested before that) .  They did not want to start me on shots because I was not under 200 but I read the book, Could it be B12, and requested the shots based on the valuable information in that book.  I actually started to feel better..........not 100% but after only a couple of months of the shots, it has probably reduced my pain and numbness by about 25%.  I also started taking sublingual B12 tablets a few times a day at regular intervals to supplement in between the monthly shots.  I've read it can take as long as 6 months to achieve healing from the B12 shots.  After that time period, what is not healed, is probably going to be unrepairable damage caused by the deficiency.  In my case, I've been low for so long, I worry I might be left with significant damage.  But.......the body has amazing abilities to heal if given the right tools.

Most doctors think that as long as your B12 is above 200, you are fine.  From what I have personally experienced, I disagree.  I suspect my problems are stemming from low B12.  

[momma2494]

Thank you for your responses.  I have asked both doctors to retest my levels to see if it is improving and they don't seem to think it is needed at this time.  I just don't understand why they are "blowing me off" with my symptoms getting worse.  I think I am going to just call another doctor and see waht they say.  

[Red_Star]

"Many B12 deficient people have so-called “normal” levels of B12.

Yet it is well-established in the scientific literature that people with B12 levels between 200 pg/mL and 350 pg/mL – levels considered “normal” in the U.S. – have clear B12 deficiency symptoms. Experts who specialize in the diagnosis and treatment of B12 deficiency, like Sally Pacholok R.N. and Jeffery Stewart D.O., suggest treating all patients that are symptomatic and have B12 levels less than 450 pg/mL. They also recommend treating patients with normal B12, but elevated urinary methylmalonic acid (MMA), homocysteine and/or holotranscobalamin (other markers of B12 deficiency).

In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss." - B12 deficiency: a silent epidemic with serious consequences - by Chris Kresser

Just to clarify, the B12 reference range goes up to 900pg/mL or 1100pg/mL depending on the lab.  I hope you don't have permanent nerve damage however B12 serum at 225pg/mL it is very possible.  Have you had your B12 levels retested yet to see if your B12 serum levels are improving?

[Dr Sharma]

Hello dear, a warm welcome  to you on Medhelp. I can understand your present dilemma. The normal vitamin B12 range is 150-350 pg/mL, deficiency with overt deficiency symptoms manifest with less than 100pg/ml levels. Since your levels were within normal range to begin with and you have been receiving vitamin shots also, your doctor may need to investigate whether the vitamin is getting absorbed. Schilling test is indicated. You also need to be checked for other possible causes for this peripheral neuropathy. These could be infections, metabolic problems like diabetes, traumatic injuries. A thyroid hormone levels assay also would be needed.

Gabapentin would help relieve nerve related symptoms and neuropathic pain.
You are welcome with any further clarifications.
Wish you all the best.