Understanding the MS diagnosis process

Understanding the MS diagnosis process

 Inspiring stories · Patient Focused Priorities

Diagnosis: the process of determining the nature of a disease or disorder and distinguishing it from other possible conditions. The term comes from the Greek gnosis, meaning knowledge.

Understanding the process surrounding a diagnosis of a disease, like MS, is not always easy. I consider, and taking my example as someone with Malignant hyperthermia (MH) , it was very strange. I still remember the afternoon, when I was washing the terrace of our flat, when suddenly the temperature of the water was different. I felt that on my right leg it was warm and on my left leg it was cold. The numbness in the right leg was not always noticeable, that is, I was not always aware of that difference.

Startled, I called my wife and told her that my right leg was numb. I sat down and, not knowing what to do, asked her for help. I couldn't feel my right leg but at the same time I didn't lose strength in it. It moved normally. This lack of sensation became apparent when she took a pin and pricked my leg. The result was something strange as my reaction was non-existent. We were quite worried and didn't know what to do until we called a doctor friend who recommended a reputable neurologist in our town.

The first consultation resulted in the beginning of a diagnostic process, still without knowing the reason why my body was divided between the left and the right, where my right half presented a frightening numbness. We started, rightly in my opinion, by having a magnetic resonance imaging (MRI) of the neuro-axis. Basically, an image of my body sliced horizontally and vertically.

It was agreed with the doctor that as soon as I got the result I would go to the central hospital, so that he could decide on the next steps to take. So, I did - that big envelope contained the whole truth. I didn't even open it. They say that "curiosity killed the cat" and, as a 39-year-old "cat", I couldn't even think of dying because of an envelope.

With a careful look at the contents of the envelope, the doctor told me that he already suspected what it could be, but he thought it was a good idea to introduce me to another doctor, also a neurologist and a specialist in my problem. Without telling me what was wrong with me, I couldn't stand it and asked him: "Is it serious?” He told me to wait, because the other doctor was coming to see me.

That quarter of an hour was without doubt one of the longest moments of my life. It was 2011 and for me it was a year of medical diagnoses. I started in June with the sad diagnosis of my late Father, with a neoplasm in his left lung and now myself with an uncertain diagnosis, however pending for 15 minutes. I was not quite sure how to react. I was alone in that corridor, the only person who was in that building with me was my father, admitted to palliative care.

Until, at some point, I was called in for another consultation. This time with the promising young neurologist who would reveal my sentence. Nice looking and quite forthright, he was carrying the report of my MRI scan and told me he suspected what it might be. "Have you ever heard of Multiple Sclerosis?" - I was appalled, even though I didn't know, that term sounded very bad to me.

"Well, we're going to do one more scan, so we have confirmation. Look at the images here...do you see these spots on your skull and along your spinal cord? These are lesions that make me very certain of the diagnosis that this is Multiple Sclerosis." At this consultation he also asked me about the symptoms I had. We ended our appointment with a lumbar puncture, which was performed a few days later.

The day of the diagnosis will be hard to forget, there were so many emotions and questions that when I got home I thought I hadn't come home with any answers.

Of major importance in the diagnostic process is the element of time. Most diseases evolve over time, and there can be a delay between the onset of disease and the onset of a patient's symptoms; time can also elapse before a patient's symptoms are recognized as a specific diagnosis. Some diagnoses can be determined in a very short time frame, while months may elapse before other diagnoses can be made. This is partially due to the growing recognition of the variability and complexity of disease presentation. Similar symptoms may be related to a number of different diagnoses.

I was very fortunate to have had an assertive and quick diagnosis. The doctor who took me in is still my doctor today. He became my friend and confidant throughout my diagnostic process and is to this day. Although it is a process of adaptation to a new clinical reality, and implies the taking of a specific medication, it goes beyond that.

With the help of your doctor, the diagnosis gives you access to various information regarding your future perspectives. Medical follow-up after diagnosis gives us the security to face MS with more confidence. It is extremely important to understand the diagnosis process as something that will help you overcome the impact, both for you and those closest to you.

Inspired to Demand More from your life with MS? Create your own Talk to Your Doctor Guide to help communicate your priorities to your neurologist at your next appointment.

Related Items

How to express yourself in appointments

Talk to Your Doctor Guide

Truth or Dare