Editor’s Note: Debi Wilson’s column “Faith of the Mustard Seed” explores a range of important topics that relate directly to the patient experience. In her debut article, she discusses her own experiences with neurologists, and encourages MS to not settle on a specialist until they feel as though their specific needs are being adequately met.
In the United States, there are a handful of neurologists who treat MS patients while having the disease themselves.
Some of the common threads among those doctors are their ability to relate and to give the attention needed to their patients, and to allowing extra time in their scheduling to listen to their patients’ individual MS stories, as they know each person’s journey with MS is unique.
Does that mean that a neurologist who does not have MS can’t do the same for their patients? No, it does not, but in my experience I find it a rare quality.
I have lived in three different cities over the past 10 years. In those 10 years, I’ve seen six neurologists. Out of those six, I would say that only one gave me the knowledge, time, and support I needed. Only the one I mentioned offered hope.
Since my diagnosis of PPMS in 2010, I have researched the disease and various treatments on my own. My doctors have given me the feeling that I am a lost cause and am on my own. My current neurologist was even surprised when I mentioned my PPMS. He said, “That is what you have?” even though I had seen him three times and my folder was right in front of him.
I am in the process of looking for “lucky number seven” in the world of neurologists.
The importance of having a doctor that offers support and, most importantly, hope is invaluable. If you’re not happy with your neurologist, find a new one.
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