Newly Diagnosed with MS? Here’s Your Checklist

Claudia Dieckmann
Written by
Claudia Dieckmann

After returning from a very interesting, insightful and inspiring multiple sclerosis conference, I got to thinking about the state of care in different parts of the world. Although care may differ, there are steps every MS-er should take after diagnosis.

Before the wish list can begin and you become an “honorary” MS-er, you will have had to get a verified diagnosis from a neurologist. What that entails can differ but in my case it included a MRI scan, lumbar puncture and blood test. This is to ensure your diagnosis is correct.

After diagnosis, people are inclined to turn directly to the Internet to provide the answers they seek. Beware of this! The internet is full of misinformation and negative stereotypes surrounding the disease. Below are some tips to keep help guide you towards more robust and balanced information as you join the MS-er club.

Find Your Local MS Society

MS societies hold a wealth of relevant information you will need to familiarise yourself with multiple sclerosis and available treatments. They often also contain lists of tried and tested medical professionals for you to consider. Many run local support groups full of people just like you (although if you are considering going, do check that they are just like you – for example if you’re recently diagnosed be sure to join a group of other recently diagnosed people). They have the same questions and are happy to share their experiences. You are not alone!

Medical Aid and Insurance

Find out what is available to you through your health insurance or medical aid. What does the government provide? This varies from country to country, so check into what is available for you.

Develop Your Professional Team

This will be dependent on your needs, but here are the types of professionals you should know exist:

• Occupational Therapist – An OT will advise on home and work adaptations to make living with MS easier. They can also train you on the use of adaptive equipment like orthotics and assistive technology.

• Social Worker – The aim of these individuals is the betterment of people in need. Social workers can serve individuals, couples, family groups or communities. Find out what’s offered in your area in terms of services.

• Psychologist – Locating a psychologist will help you understand and come to terms with the new set of emotions you may deal with after diagnosis.

• Biokinetist/Neuro-physiotherapist – These professionals are crucial for rehabilitation as they will explain and demonstrate the best physical exercises for your needs. It is important to keep moving with MS to improve circulation and muscle tone.

Develop Your Personal Team

Sort out your relationships with your friends and family. It may be difficult for these parties to come to terms with your diagnosis and it may even be difficult for them to understand. Be honest with them about how you are feeling both physically and emotionally. In some instances, it may even be useful for your family members to seek emotional help of their own. Working with a psychologist is often beneficial for understanding and processing grief.

Additionally, your diagnosis will help you rid yourself of those “good time” friends. You have different needs and priorities now, and because of that you will need people around you who are understanding, sympathetic and reliable.

Although this list is short, it should be considered immediately following diagnosis. It may not be exhaustive, but it is a good place to start!

“Patient participation in treatment is the greatest drug of the century”.

- Dr. Gavin Giovannoni, Professor of Neurology at the Centre for Neuroscience and Trauma at the Blizard Institute, EM/MS Barcelona 2015

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