Personal Story

Jen

Christine
For most of my life, I knew something was wrong with my body, but I did not know pernicious
anemia or B12 deficiency could explain so much of it. I also did not know a “normal-looking”
serum B12 level could still miss a functional deficiency if MMA and homocysteine are not
checked.

Looking back, my symptoms started in childhood. I was born with vision problems and was
often in and out of the hospital with pneumonia and bronchitis. My liver enzymes were up and
down over the years. As a child, one of the only physical signs I remember is that I could never
do a pull-up. When I hit puberty, severe fatigue, irregular periods, and weight gain began. I was
diagnosed with insulin resistance and PCOS and was told I would never have children.

As a young adult, I tried to donate blood because I have O-negative blood, but I was told I was anemic and could not donate. At 20, after being hit by a truck, imaging showed old damage in my joints and spine. I was told I had the joints of a much older woman and had developed scoliosis. After that came years of pain, medications, and being treated like the symptoms were separate problems instead of part of a bigger picture.

At 24, I passed out at work after severe abdominal pain. Doctors removed my gallbladder and a benign colon polyp. Gastritis was also noted, but I do not remember anyone explaining what that meant or why it mattered.
In 2013, I became pregnant with my miracle son. During pregnancy, my hemoglobin dropped and I was placed on iron. I delivered at 34 weeks after two months of hospital bedrest. After delivery, I developed postpartum preeclampsia, my left leg swelled badly, and my blood pressure problems began. My son later showed signs of developmental differences, including rocking, “happy hands,” sensory issues, anxiety, ADHD symptoms, and growth concerns. He is now being tested, along with my daughter.

In 2015, I became severely ill. I had seizures, hallucinations, severe constipation, and then a two-month hospitalization that I barely remember. I was transferred to a larger hospital after the seizures started. My family was told I may be a “vegetable” for the rest of my life. I could not eat, walk, or talk properly, but somehow I pulled through. I was diagnosed with drop foot at that time.

Then in 2018, I developed what was diagnosed as Bell’s palsy after the right side of my face lost function. I was treated with steroids and antibiotics. About a week and a half later, I woke up with my legs frozen. I spent nearly two months in the hospital again and was diagnosed with transverse myelitis and told I could be in the beginning stages of multiple sclerosis.

Years later, when I reviewed those records, I found something that changed everything.
A peripheral blood smear had shown macrocytes, microcytes, ovalocytes, spherocytes, hypersegmented neutrophils, and other abnormalities. My serum B12 was around 400, so no one looked further. MMA and homocysteine were not checked. Looking back now, with what my current doctors and I know, that episode appears consistent with subacute combined degeneration of the spinal cord from B12 deficiency.
That realization broke me and validated me at the same time.

If MMA and homocysteine had been checked in 2018, I may have been started on B12 injections years earlier. That was before my daughter was born, and before I lost the baby before her. I do not blame myself. I reported my symptoms. I showed up. I trusted the system. I simply did not know this condition existed.

After nine months of physical therapy, I walked again, but with a cane.
In 2020, I became pregnant with my daughter. She was also born at 34 weeks. I was already admitted for preterm labor and preeclampsia. She was breech, so I expected a C-section, but it became an emergency C-section during COVID. I was alone without visitors. My blood pressure went dangerously high, and I knew something was wrong, but the nurse did not believe it was possible to be in that much pain without screaming. My water broke and the nurse felt my daughter‘s foot. Somehow, both my daughter and I survived.

After that, I truly started going downhill, but the decline happened so gradually that it became my normal. I did not realize how much I was losing: my memory, emotional regulation, ability to walk, strength, language, and independence.
By 2024 and 2025, my body could no longer compensate. My ANA turned positive, I was given a lupus diagnosis, and I was passed around between many specialists. Skin lesions and wounds began appearing on my legs. My wounds stopped healing. My body started “screaming” through my skin.

The brain fog became severe enough to affect my language. It did not matter whether I tried to speak English or use American Sign Language — what my brain wanted to say would not come out correctly through my mouth or my hands.
I was constantly falling. I lost the ability to get out of a chair without pulling myself up. I could not roll myself over in bed. I had blood pooling in my legs that doctors still have not fully explained. I did not even realize I had lost the ability to flex my thigh muscles until testing showed how much damage had occurred.

Before diagnosis, my legs twitched, cramped, and felt like bugs were crawling under my skin. A few months before I was finally diagnosed, the twitching and cramping stopped — but somehow I knew that was not a good sign. It felt like my nerves had stopped fighting.
A nerve EMG showed severe neuropathy on the left, moderate neuropathy on the right, and muscle damage in both arms. Later, my leg EMG showed chronic demyelination, with active moderate demyelination in my left calf muscle.
By then, I had fought to be seen by UF Health Neurology in Gainesville. That doctor spent over an hour with me. That one hour changed my life.
She ordered the right blood work.

My MMA came back elevated at 498. My homocysteine was 13.6. My primary care doctor called in B12 injections quickly, but I was never shown how to inject them. I went to YouTube, learned how to do it myself, and injected right away.
I started every-other-day intramuscular injections, then was lowered to once weekly. I quickly noticed a pattern: every few days, the symptoms that had improved would start coming back. I pushed for more appropriate treatment and requested testing for intrinsic factor blocking antibodies and parietal cell antibodies.
Both came back positive. My parietal cell antibody titer was 1:640.
That was the first time I cried for myself in as long as I can remember.
It was grief, validation, anger, relief, trauma, and hope all at once. So many pieces finally made sense: the neurological damage, the anemia patterns, the gastritis, the pregnancy complications, the cognitive changes, the skin and wound-healing issues, the spinal cord symptoms, and the years of being dismissed.
My family history now feels important too. My father died from liver failure two months after his 47th birthday. His brother died by suicide after becoming wheelchair-bound from paralysis. My paternal grandmother died of breast cancer in her 50s. I have not yet found living family members on that side, so I pulled my father’s records myself. No autopsy was performed, so his medical records are all I have.
One of the greatest gifts in finally learning the truth is that my children can now be properly tested. Both of them have symptoms, one more than the other. I cannot turn back time, but I can use what I know now to protect them and possibly help someone else.
My EMG may show permanent damage, but I am not giving up on my body. I keep using the strength I have left. I keep letting my nerves and muscles know they still have a reason to wake up.
This journey has been mental, physical, spiritual, and emotional. I have had to grieve what was missed while also being grateful I am still here. Some days I ask myself how I survived. Then I remember my children, my husband, my family, and the love that kept me fighting before I even knew what I was fighting.
I am still fighting for proper treatment. I am still working to have my functional iron deficiency recognized and treated correctly. I am still healing to the best of my ability. But I am more confident than ever that I know my body, and I will never again allow a doctor to gaslight me or make me doubt what I am living through.
If someone had told me a year ago that a deficiency could cause this level of damage, paralysis, cognitive decline, emotional changes, skin problems, and even threaten my life, I am not sure I would have believed it.
Now I know.
That is why I am sharing my story.
Pernicious anemia and B12 deficiency can be devastating when missed, but they are treatable when caught early. Awareness matters. Proper testing matters. MMA and homocysteine matter.

Listening to patients matters.

I am deeply grateful for the Pernicious Anemia Society, B12 awareness advocates, and Sally Pacholok’s documentaries for helping people understand what so many of us have lived through. The Pernicious Anemia Society has my permission to share my story in full or in part for awareness, education, and advocacy. As I continue healing, I stand with this community in raising awareness so fewer people have to suffer for years from something that could have been recognized and treated sooner.

more personal stories

Pin It on Pinterest

Share This