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Have you been using your new scale to measure and monitor your MdDS? The new scale quantifies symptom severity from 0 to 10 and really simplifies MdDS symptom tracking. It’s being adopted to ensure accurate, consistent symptom reporting worldwide, and we encourage you to use yours regularly. Routine tracking isn’t just about recording numbers.

It’s about gathering the data you need…

to reveal patterns you never noticed before. Making correlations can enable you to adjust your management tactics and take control of your MdDS. And maybe even achieve remission. Now you’re probably wondering…

To better understand your journey with MdDS, it’s important to define key terms, such as remission, episode, and domain.

The MdDS Foundation is committed to adding to the MdDS knowledge base with standardized information that brings clarity and consistency, and paves the way for a more informed and empowered MdDS community. So we consulted with health experts and citizen scientists to establish definitions for MdDS. An important base to establish is that the defining symptom of MdDS is the perception of movement in the absence of actual motion. You may experience things like imbalance, fatigue, cognitive impairment, etc. – but these impacts are not symptoms of MdDS. We’ll talk about these domains a little later. What’s important now is understanding that the core symptoms of MdDS are rocking, bobbing, swaying and gravitational pull.

Understanding your baseline: What is an episode?

Before tracking your journey, it helps to understand how health experts view timelines. In MdDS, an episode is a period when you’re experiencing the perception of movement—specifically rocking, bobbing, swaying, or gravitational pull. An episode begins when these core sensations start. When an episode ends is not quite as simple. It doesn’t instantly end just because your symptoms temporarily dial down. For some, the perception of movement may drop to zero for a week, a month, or even several months. While these windows offer welcome relief, breaks shorter than six (6) are not clinical remission. It’s important to recognize that the symptomatic periods before and after a break shorter than 6 months are actually part of the same underlying episode. Viewing short breaks as separate episodes will artificially inflate the number of episodes you’ve experienced.

Defining a symptom break vs. true remission

MdDS symptoms can fluctuate significantly. As you move towards remission, you’ll generally experience a decrease in symptom severity, with symptom-free intervals becoming more frequent and lasting longer. Once achieved, remission can last indefinitely, offering lasting relief from MdDS. To determine if you are experiencing a temporary symptom break or true remission, look at these three criteria:

• The Six-Month Rule: True remission requires a sustained, continuous absence of all perceived movement symptoms lasting six consecutive months or longer. Anything shorter is simply a temporary break within your current, ongoing episode.
• No Medication-Induced Relief: Remission must be achieved without the use of medication to suppress or manage the perceived movement.
• Core Symptoms Only: Remission is judged solely on the absence of perceived movement (rocking, bobbing, swaying, or gravitational pull). Secondary symptoms like dizziness, imbalance—any of the commonly associated symptoms—do not count against remission status.

Recognizing a temporary pause for what it is keeps expectations realistic, so you aren’t left feeling set back when an episode resumes.

For the purpose of tracking symptoms, the remission begins at the start of a 6-month symptom-free period—which you won’t know until six months have passed. If your rocking, bobbing, swaying, or gravitational pull returns after a break that is shorter than 6 months, the symptomatic periods before and after that break are part of the same continuous episode. Complicated, we know! Using our printable symptom tracker will help.

Consistency is Key 🗝️ Monitor Regularly

Given the nuanced nature of remission and episodes, it becomes especially important that you measure and monitor your symptoms regularly.

Taking this proactive approach — monitoring your symptoms with the new scale — is a powerful tool in managing your MdDS. Whether you use your phone’s Notes app or a simple notebook to keep a log—keep it simple! Keeping track and noting fluctuations might help you figure out what makes things better or worse. And maybe even lead to a long break from symptoms — and even remission! So, get that scale printed and start tracking — you got this!

Right-click, ctrl+click or long press to download. To request a printed copy of the scale by mail, complete this form.