Published on May 15th, 20141
An S-LP With Dysphagia
By Jennifer Sweeney, S-LP
I always believed that I would be able to take care of myself when in hospital, as long as I had my full cognitive and communicative abilities. What I was not prepared for was developing a neurological condition that had an unusual presentation.
In 2010, I developed excruciating pain in my face. I knew that for most women at the age of 50, this kind of pain is caused by a condition called Trigeminal Neuralgia (TN): the demyelination of the trigeminal nerve by a blood vessel rubbing near the brainstem. But I was also aware that it could be the result of dental problems, sinus problems, a brain tumour or multiple sclerosis (MS).
I had several doctors, including neurologists, examine me from head to toe. This was considered to be an adequate screening for anything affecting my cranial nerves, and my physicians ordered a non-urgent MRI. While I waited for the MRI, I started having gastrointestinal problems, including gastroparesis and reflux, especially at night. I then had significant difficulties with constipation. I spoke with a pediatrician friend who suggested it might be from MS. The neurologist and the gastroenterologist I was seeing both dismissed the possibility.
I was in almost constant pain, but the pain was worse when I ate or brushed my teeth. I started having problems swallowing pills as they would get stuck in my esophagus and would sometimes come back up. I kept trying to figure out what was wrong with me. It certainly seemed like a neurological problem but the GP I was seeing didn’t take my symptoms seriously. When I finally ended up in the hospital with severe malnutrition, I hoped I would finally get the help I needed.
I was under the care of an internal medicine doctor who specialised in eating disorders. I continued having problems swallowing pills. One night I had a pill stuck in my left pyrifom sinus but I was able to manually coax it up so I could swallow it down the other side. I realized that in my weakened condition, I would do best to have pills pass down the side that did not have the feeding tube in it. I reported this incident to the nurse and the next day a resident came in to check my gag reflex. I had hoped that a speech-language pathologist would come to see me, but I never did see one. At that time I knew I had to get out of there because they had already decided that my problems were all in my head.
When I spoke with the doctor about my swallowing problem, she called it a “perceived” swallowing problem. I was given a diagnosis of “functional dyspepsia” and sent home with recommendations to engage in cognitive behavioural therapy and have follow-up appointments with the eating disorders doctor and a nutritionist.
When I finally had a brain MRI five months later, I discovered I had lesions in the brainstem that corresponded with the right facial pain (pons – trigeminal nerve) and the gastrointestinal motility problems (medulla – vagus nerve). It took me another six months to bypass the neurologist I was seeing before I would receive an official diagnosis from the MS Clinic. Yes, I have MS.
My case continues to be highly unusual because I can still go through a head-to-toe neurological exam with no observable symptoms.
My hope is that my story will strengthen your resolve to educate doctors and medical students and to find ways to assess every patient complaining of swallowing problems. I know if I had seen an S-LP in the hospital, my MS would have been diagnosed much earlier.
If you are interested in my story you can read more on my website: www.jennifersweeney.ca.
Caption for feature image:
Jennifer and her husband Daniel in Long Island, New York in May 2013.
Jennifer Sweeney, S-LP
About the author:
Jennifer Sweeney, S-LP worked as a speech-language pathologist and consultant for 20 years, helping preschool children, young adults and seniors in the health-care system and in private practice. Her consultancy work was mainly related to the not-for-profit community in British Columbia. In 2000, Jennifer founded the BC Aphasia Centre to support the estimated 10,000 people in British Columbia living with aphasia. She retired from active clinical practice in 2007 but maintained a small practice and her professional certification until 2011. She lives in Vancouver, BC with her husband, Daniel.