Home / Blog / Advocacy / NEW Severity Scale Simplifies MdDS Symptom Tracking Our Blog Advocacy, I Am Empowered, Announcements 4.3.25 NEW Severity Scale Simplifies MdDS Symptom Tracking The MdDS Foundation is thrilled to provide you with a printable and portable symptom severity scale. This user-friendly tool is designed to bridge the communication gap between patients and doctors, offering a clearer understanding of the varying levels of severity experienced by individuals with MdDS. Right-click, ctrl+click or long press to download. How Does the Scale Work? It’s remarkably simple. You’ll measure your MdDS symptoms—the perception of movement in the absence of actual motion—on a scale from 0 (None) to 10 (Very Severe). At 1, symptoms are barely noticeable. You might feel a slight sense of motion but it doesn’t interfere with your day. At 5, the perceived motion may disrupt daily activities. At 10, symptoms are unbearable and severely impact quality of life. It’s possible that one day you might be at level 5 and another day at level 3. Or even experience level 3 and 5 within one day. But for tracking purposes, you should select one level, whichever dominated the day. And, yes, that 0 and remission is possible! Patients with zero perceived motion, sustained for at least six months, are considered in remission. Keep a log of your numbers in your phone’s calendar or simply a notebook, so you can see – and share – how your levels change over time. Why Symptom Tracking Helps You Many people with MdDS feel isolated or misunderstood. However, tools like this severity scale can empower you. By consistently tracking your symptoms, you can: Identify patterns: Are your symptoms worse at certain times of day or after particular activities? Monitor changes: See how treatments or lifestyle adjustments affect your symptoms over time. Communicate effectively: Bring clear, measurable information to your doctor or therapist. This scale is designed primarily to help you measure MdDS—the feeling of movement—and quantify it with numbers from 0-10. The symptoms of MdDS include only the feeling(s) of rocking, bobbing, swaying, or gravitational pull. But you can also use the scale to describe the intensity of associated symptoms, such as imbalance, fatigue, or trouble thinking, which can range from mild to severe. Sharing these findings with your healthcare provider can help them better understand the variability of your symptoms and their impact on your daily life. Beyond individual benefits, symptom tracking also aids research. The MdDS Foundation is dedicated to advancing research and finding treatments. To this end, you’ll be able to report your level numbers in the MdDS Patient Registry when it launches. Ultimately, consistent symptom monitoring may unveil a path towards better MdDS management. For now, please share your numbers with anyone who needs to see how the varying levels affect you. Help them understand that living with MdDS can be a different challenge every day. Ready to Get Started? 🙂 🖨️ Download Your Copy: Right-click, ctrl+click or long press the scale above. 📬 Want a Scale by Mail? Receive a free, professionally printed bookmark / wallet card with the scale on one side and educational facts about MdDS on the other. Keep one in your wallet and raise awareness everywhere you go! Simply complete this form to provide your mailing address. Hurry! Supplies are limited. Measuring Things Like Balance & Dizziness 🕒 1-minute read Maybe you have a staggering gait, or you’re mentally fatigued. Perhaps you liked the old scale better because it described things like how the floor seems to move, or how routine tasks can become difficult to complete. We hear you, and we understand why those specific descriptions were meaningful to you! However, the power of this new scale lies in its ability to quantify the severity of your motion sensations—without using language that might not apply to everyone and could limit its usability. The New Severity Scale: Why It’s More Effective The new scale allows health professionals to focus specifically on MdDS—the perception of motion—distinct from associated effects such as balance, dizziness, fatigue, and overall quality of life. Researchers study these effects separately, as domains, so they can better understand MdDS and its full impact on your life. By focusing on what matters most in each domain, they can better understand MdDS, and ultimately, they may be able to tailor treatments to patients. Rest assured, the MdDS Patient Registry currently under construction is designed to capture your full MdDS experience across different domains. This clear and universally applicable scale will be a vital tool that enables you to provide researchers with the precise information they need to advance understanding and treatment. Related posts: Could Regular Tracking Be Your Key to Remission?
Dear Readers—It’s important to recognize that the new scale is designed to quantify severity not describe symptoms. It was important to make this distinction clear when designing the new scale, so that it may one day be a validated tool. In research, a validated tool is a measurement instrument, like a survey or questionnaire, that has been rigorously tested to ensure it accurately measures what it’s intended to measure and produces reliable results. This means the tool has demonstrated empirical evidence of its validity and reliability, often through rigorous testing and analysis. Using validated tools helps ensure the quality and credibility of research findings. We hope you find this information helpful, and that it enables you to use the new scale effectively as a participant of the MdDS Patient Registry.
