MS Perspectives: My Diagnosis Story

My diagnosis story blog was originally created for the purpose of sharing my experiences with MS. I have been diagnosed with MS since 2008. Since then, I’ve had many different doctors, specialists and other medical professionals diagnose me with various forms of MS. At times it seemed like they were all right! But each time, I found out that there was something else going on that wasn’t being addressed or understood by them. So I decided to write down what happened when I went through their diagnostic process.

I’m not sure if anyone else has ever experienced this before, but I think it’s important to share my experience so others don’t go through the same thing. And maybe some of these things will make sense to someone else too.

The Diagnosis Process

When I was diagnosed with MS, I didn’t really understand why it was happening to me. When I did start having problems, I thought it might just be a bad reaction to medication or something similar.

After all, I’d never heard of MS until years later when my mom told me she had it. She said she got it from her boyfriend back in high school (who died of ALS). I thought it was strange that I never had any of the typical signs of MS like numbness and tingling in my hands until after I started having balance problems in college. Since then, it seemed like the disease was just slowly progressing as time went on.

As I went through medical testing to see what the problem was, I knew something must be wrong because I could barely stand up without feeling dizzy. I remember falling down several times during this time.

One time I was at a coffee shop on campus and had to be taken to the hospital by ambulance. What happened was, I ordered my coffee and as the barista was giving it to me, I suddenly started feeling wobbly. The next thing I knew, I was lying on the floor with a broken coffee cup beside me and a bunch of people staring at me!

Sources & references used in this article:

Two sides to every story: perspectives from four patients and a healthcare professional on multiple sclerosis disease progression by J Burtchell, K Fetty, K Miller, K Minden, D Kantor – Neurology and Therapy, 2019 – Springer

Life stories and sickness experience: A performance perspective by J Monks – Culture, medicine and psychiatry, 1995 – Springer

Being 111 and Being Me: Self, Body, and Time in Multiple Sclerosis Narratives by J Monks, R Frankenberg – Disability and Culture. Benedicte …, 1995 – books.google.com

HIV diagnosis rituals and identity narratives by P Block, E Rodriguez – Practicing Anthropology, 2008 – Society for Applied Anthropology

A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis by NL Roth, MS Nelson – AIDS care, 1997 – Taylor & Francis

On the” disappearance” of hysteria: A study in the clinical deconstruction of a diagnosis by J Frost, J Grose, N Britten – Health:, 2017 – journals.sagepub.com

Introduction to counseling: An art and science perspective by MS Micale – Isis, 1993 – journals.uchicago.edu

Trial and error in my quest to be a partner in my health care: a patient’s story by MS Nystul – 2015 – books.google.com