I had been severely, surreal-ly sick for years–decades actually. My heart palpitations started in 2005, but I had symptoms before that. In 2008, I got the diagnosis of “Postural Orthostatic Tachycardia Syndrome” (POTS). According to my primary doctor at the time, my tilt table result was “impressive.” The tilt table test is the method by which POTS is diagnosed. My heart rate spiked into the 140 beats-per-minute range just standing upright for a few minutes. I became severely short of breath as I continued to stand. I told my cardiologist I thought it was asthma I’d been experiencing. She said, “No, your heart is just working that hard.” POTS is a syndrome, a cluster of symptoms, and therefore, not a diagnosis of a definitive disease. From researching online after my diagnosis, I found that POTS does not have a known cause or cure. It is not deadly, and sometimes people have spontaneous remission. Medications, compression stockings, and dietary approaches helped some people manage the symptoms of POTS, but were not curative. Here are just some of the symptoms I experienced with my “POTS”:
- neurological symptoms
- tachycardia (rapid heart beat)
- heart palpitations
- neuro-psychological symptoms
- problems with memory, confusion, trouble with word recall
- pallor (pale skin)
- anorexia (decreased appetite)
- weight loss
- syncope or feeling lightheaded, like passing out
- restless legs
- parasthesia (numbness, tingling, burning sensations)
- severe shortness of breath
- exertional dyspnea (shortness of breath with physical exertion)
POTS is categorized as an autonomic nervous system disorder, or “dysautonomia.” My cardiologist explained that, though it affected my heart, POTS is actually a neurological disorder. The nerves in my legs were not getting the signal to contract; contraction of the large muscles in the lower extremities is a main way that blood from the lower extremities returns to the heart and head. I found a dysautonomia support forum on the Mayo Clinic website. The stories were heartbreaking. A mother described her teenage daughter’s debilitating illness. She said her daughter’s life was ruined. This story was repeated over and over again, and mirrored my story.
In September 2011, I received a diagnosis of a vitamin B12 deficiency. This was before I was diagnosed with pernicious anemia, in February 2012, as the cause of my vitamin B12 deficiency. Nearly four years passed between my diagnosis of POTS and pernicious anemia (PA). I was under the impression that, though my symptoms pretty much destroyed my life as I knew it, POTS would not kill me. I was wrong, because I was actually suffering from pernicious anemia, which, as “pernicious” means, is deadly. I gratefully received a correct diagnosis of PA before I died, or ended up in a wheelchair, but people still die from this autoimmune disease. The American Journal of Public Health published a study which shows that autoimmune diseases are a leading cause of death in young and middle-aged women in the United States.
Between September 2011, and February of the following year, I researched vitamin B12 deficiency online. When I brought up a website which listed symptoms of vitamin B12 deficiency, I was shocked. It listed all of my “POTS” symptoms. In fact, if one were to do a Venn diagram, it would be overlying circles, instead of a mere intersection of circles. When my doctor gave me a pernicious anemia diagnosis in February, he said, “This absolutely explains all of your POTS symptoms.” And as for the possibility of recovery he added, “It’s going to be a long haul,” but told me of a colleague who had numbness from her knees down, because of a delayed diagnosis of vitamin B12 deficiency. After many years of vitamin B12 treatment, she regained the feeling in her legs.
It occurred to me that if my POTS diagnosis was actually from a vitamin B12 deficiency, others with POTS were also suffering from an undiagnosed vitamin B12 deficiency or pernicious anemia. They, too, were told they had a mysterious, inexplicable disorder, for which there were only palliative measures. Perhaps most of these POTS sufferers are actually vitamin B12 deficient.
So if you have received a diagnosis of POTS, a dysautonomic disorder, or a neurological/autonomic nervous system problem, I encourage you to pursue finding a cause for your symptoms. If you have depression, bone-deep fatigue, or any of the other symptoms mentioned above, and you feel your doctors are “missing something,” please do not give up searching. Consider having your doctor test you for a vitamin B12 deficiency. Continue to research possibilities. A good place to start is by reading, Could It Be B12?: An Epidemic of Misdiagnoses, by Sally Pacholock, R.N. and Jeffrey Stuart D.O..
Trust your intuition. Trust what your body is telling you. Persevere.