Visiting a doctor can be a stressful event if you are worried what symptoms might mean, or if you feel uncertain about how to explain what you are experiencing. These visits are valuable opportunities for you to engage with your doctor, ask questions, find out more about your health and request a change to the plan if you feel that things aren’t improving. Developing a partnership with your doctor can help you access the healthcare resources you need. Time invested in managing your health will be time well spent.
We have compiled some tips to help you maximise the time you have with your doctor at each stage of your journey from when you first notice symptoms, through getting a confirmed diagnosis and help managing NDM, and beyond. It is important to remember that NDM is a rare disease, and your doctor may never have met someone before with your condition or may have limited experience with NDM. It is normal for you to be referred to a specialised centre with doctors who have additional training in rare diseases that affect the nervous system and muscles, and which has more experience in diagnosing and giving advice on conditions like NDM.