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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.

Now, let’s talk about remission.

MdDS symptoms can come and go, with some people experiencing months or even years without any symptoms of perceived movement. These symptom-free times are called remissions. You may still experience associated symptoms like imbalance or a sense of unstable ground. But MdDS-associated symptoms should not be taken into consideration when determining your remission status.

As you move towards remission, you’ll generally experience a decrease in symptom severity, with symptom-free intervals becoming more frequent and lasting longer. While these brief breaks from symptoms can be encouraging, they don’t yet signify remission. A period of six (6) full months without symptoms — and without the use of medication to manage the perceived movement — is required to confirm remission. Once achieved, remission can last indefinitely, offering lasting relief from MdDS. However, should symptoms return, indicating a relapse, it’s important to begin tracking severity levels again, treating it as the start of a new episode.

MdDS symptoms can come and go.

Closely related to remission is the concept of an ‘episode.’ Though MdDS is considered chronic, a person with the syndrome may have periods of active symptoms followed by a symptom-free period of remission, only to become symptomatic again. For the purpose of tracking symptoms, the end of an episode is defined by the start of a 6-month symptom-free period—which you won’t know until six months have passed. Complicated, we know!

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. 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 — that’s what remission is! 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.