My Painful B12 Deficiency and How I Got My Running Legs Back
Updated: Oct 9, 2022
Numbness, Twitching, Tingling, and Painful Spasms
I do not take vitamins. They make me nauseous. In 2009 I learned how dangerous deficiency of vitamin B12 in the body is. I had no idea that the numbness, twitching, tingling, and painful spasms and cramps that my hands, legs, and toes were experiencing for over a year was due to severe B12 deficiency.
Vitamin B12 is critical. Our bodies need B12 to maintain healthy brain function and nervous system. B12 helps to produce the myelin sheath around our nerves. B12 is important in the production of healthy red blood cells and bone marrow. Some of the causes of B12 deficiency include, but are not limited to, celiac disease, pernicious anemia, immune system disorder, and alcoholism. In my case, none of these was the cause of my severe B12 deficiency. The cause of my B12 deficiency was neurological.
Sometime in 2008, I began experiencing mild twitching in my fingers and hands. Then I began experiencing painful twitches and spasms. Soon the toes in my foot began to twitch and cramp. My right toe became numb. I’d wake up in the middle of the night to sudden excruciating spasms in my right calf. My primary care doctor referred me to a neurologist. She conducted an EEG and EMG test and announced I did not have ALS and that my symptoms would resolve themselves.
My symptoms did not resolve themselves. Things got progressively worse. The numbness, twitching, spasms, and tingling sensations got more intense. The burning and numbing sensation in both feet and toes made shoes uncomfortable to wear. My fingers painfully locked, fanned out and became stiff anytime, anywhere – while teaching, eating, driving, watching TV, and running. My right toe and right calf suffered the most.
Soon my gait, walking, and running were affected. I was no longer a fast walker. I could no longer push my self when I ran. My legs experienced muscle weakness, tingling, and electrical shock like sensations. I had difficulty going up stairs. I felt short of breath. I could no longer run distances in the time I was accustomed.
The “Pork Diagnosis”
Seven months after my first EEG and EMG, I saw a team of two new neurologists. I tired easily. I was fatigued. That summer I stayed in bed most of the time. I read nine books.
A spinal tap revealed elevated levels of protein in my spinal fluid. I was diagnosed with CIDP (chronic inflammatory demyelinating polyneuropathy). An MRI and another EMG was ordered. Both suggested I did not have CIDP or MS (multiple sclerosis). Forty-eight vials of blood were drawn in four weeks testing for everything under the sun. I was sent to a hematologist/oncologist who tested for several things including bone marrow cancer. One of the neurologists told me they could not figure out what was wrong with me. I was told my symptoms were similar to those experienced by workers at a pork processing plant and to stop eating pork for now. How odd – I do not work at a pork processing plant and both neurologists never asked if I eat pork.
Gave Me Back My Running Legs
The “pork diagnosis” and no definitive diagnosis despite oodles of tests were unsatisfactory. My painful and debilitating symptoms were intolerable. What was causing the numbness, twitching, and tingling on both legs and legs? Why did I experience terribly painful spasms in my right toe, which is now completely numb? Why did I have elevated levels of protein in my spinal fluid? Was it CIDP or not? Why couldn’t I walk normally? Why couldn’t I run? I needed answers.
I did my research. I found Dr. David Cornblath, a renowned neurologist and CIDP specialist at Johns Hopkins. I made an appointment. I sent my test results and doctors’ clinical notes to him. After his review of my records, my symptoms, and his assessment of my numb right toe, which did not respond to pin pricks, I got my last EMG test during my visit. I got my diagnosis – myelopathy of the spinal cord due to severe B12 deficiency.
My B12 level was very low and my MMA (methylmalonic acid) was very high. I discovered my body is not able to produce B12. I can’t absorb B12 from the foods I eat. And I am not a vegetarian. I was given a B12 injection (1, 000 mcg). I went home with a prescription for a B12 injection every day for a week, then once a week, and then once a month for life, along with daily oral B12 (1,000 mcg). Dr. Cornblath gave me back my running legs!
I Could Still Do the Distance
A month after my diagnosis, I went for a 3 mile run. It felt great. Slowly, I began to add more miles. I trained for the 2010 North Face 50 miler (Washington D.C), my fifth 50-mile ultra. I needed to know I could still do the distance. I didn’t make the 13-hour cut-off. At 12:54, I had 4.1 miles to the finish. I kept going. At the finish, my family, the race director, and a volunteer greeted me with a medal. I placed 183/203 runners but without an official time. I did the distance in my unofficial time of 14:25:51. I was thrilled!
B12 Deficiency is Serious
Had I not gotten a third opinion, my situation could have potentially gotten worse. Untreated B12 deficiency is potentially life threatening. It can lead to paralysis, dementia, psychosis, and permanent and irreversible damage. My right toe has residual numbness. Based on my experience, if you are having tingling, numbness, and spasms in your limbs, and get awaken by painful calf and toe cramps, get your B12 and MMA levels checked. If these symptoms persist, see a top neurologist. Get a second and third opinion. B12 deficiency is serious. Learn about B12 deficiency causes, symptoms and treatment. Don’t let debilitating and dangerous B12 deficiency stop you in your tracks!
This article was first published July 22, 2016 in Huffington Post.
I continue to receive emails and DMs from readers from all over the world who share their stories or are having similar symptoms. They inspired me to write what I've learned about B12 deficiency 12 years after I was diagnosed.
Read next: Living and Running with Painful B12 Deficiency.
Read next: The Dangers of B12 Deficiency for Athletes is published in Women's Running magazine.
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