CASE STUDIES

Below are examples of how Vitamin B12 deficiency has affected sufferers

Miriam's Story

"My painful B12 deficiency and how I got my running legs back"

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 caused by 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 disorders, and alcoholism. In my case, none of these was the cause of my severe B12 deficiency. The cause of my B12 deficiency was neurological.

My Symptoms

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 both feet began to twitch and cramp. My right toe became numb. I’d wake up in the middle of the night to sudden excruciating cramps in my right calf. My primary care doctor referred me to a neurologist. She conducted an EEG and an 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, twitches, 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 myself 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 were ordered. Both suggested I did not have CIDP or MS (multiple sclerosis). I was sent to a hematologist/oncologist who tested for several things including bone marrow cancer. Forty-eight vials of blood were drawn in four weeks testing for everything under the sun. 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 exhibited 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 arms? Why did I experience terribly painful spasms in my completely numb right toe? Why did I have elevated levels of protein in my spinal fluid? If it wasn’t CIDP, what was it? 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 got an early autumn appointment. I sent my test results and doctors’ clinical notes to him. After his review of my records, my symptoms, and 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) level 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 shot (1, 000 mcg). I went home with a prescription for a B12 shot 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. I began to add more miles. I trained for the 2010 North Face 50 (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. I walked to the finish. My family, the race director, and a volunteer greeted me with a finisher’s 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!

Vivian's Story

It could be old age, or

it could be low B12

Ilsa Katz was 85 when her daughter, Vivian Atkins, first noticed that her mother was becoming increasingly confused.

“She couldn’t remember names, where she’d been or what she’d done that day,” Ms. Atkins recalled in an interview. “Initially, I was not too worried. I thought it was part of normal ageing. But over time, the confusion and memory problems became more severe and more frequent.”

Her mother couldn’t remember the names of close relatives or what day it was. She thought she was going to work or needed to go downtown, which she never did. And she was often agitated.

A workup at a memory clinic resulted in a diagnosis of early Alzheimer’s disease, and Ms. Katz was prescribed Aricept, which Ms. Atkins said seemed to make matters worse. But the clinic also tested Ms. Katz’s blood level of vitamin B12. It

was well below normal, and her doctor thought that could be contributing to her symptoms.

Weekly B12 shots were begun. “Soon afterward, she became less agitated, less confused and her memory was much better,” said Ms. Atkins. “I felt I had my mother back, and she feels a lot better, too.”

Now 87, Ms. Katz still lives alone in Manhattan and feels well enough to refuse outside assistance.

 

Still, her daughter wondered, “Why aren’t B12 levels checked routinely, particularly in older people?”

 

It is an important question. As we age, our ability to absorb B12 from food declines, and often so does our consumption of foods rich in this vitamin. A B12 deficiency can creep up without warning and cause a host of confusing symptoms that are likely to be misdiagnosed or ascribed to ageing.

A Vital Nutrient

 

B12 is an essential vitamin with roles throughout the body. It is needed for the development and maintenance of a healthy nervous system, the production of DNA and formation of red blood cells.

A severe B12 deficiency results in anaemia, which can be picked up by an ordinary blood test. But the less dramatic symptoms of a B12 deficiency may include muscle weakness, fatigue, shakiness, unsteady gait, incontinence, low blood pressure, depression and other mood disorders, and cognitive problems like poor memory.

Like all B vitamins, B12 is water-soluble, but the body stores extra B12 in the liver and other tissues. Even if dietary sources are inadequate for some time, a serum deficiency may not show up for years.

If the amount of B12 in storage is low to begin with, a deficiency can develop within a year, even more quickly in infants.

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