Preparing for doctor visits
It is so important to be prepared for doctor visits. This can’t be stressed enough. Dystonia is a complex disorder and our symptoms are very specific to us, making it imperative that doctors know as much unique information about us as possible. Be sure to provide them with your medical history, all of your symptoms (even those that seem minor), medications and nutritional supplements you are taking, and the things that exacerbate and calm your symptoms. Also be specific about how your symptoms fluctuate throughout the entire day.
If it is your first visit, add as much additional information as possible to supplement the paperwork they ask you to fill out. If you know you have dystonia prior to your visit, get as educated as possible about it. Be familiar with the different kinds of dystonia and the various treatment protocols.
We need to keep our doctors on their toes and sometimes educate them. It does not matter how many patients they have seen. They have never seen you. You are different than every other person who walks through their door even if you share the same diagnosis; and as we all know, there is no cookie cutter treatment approach for dystonia.
When your doctor suggests something, go home and learn more about it to decide if it is right for you. The wrong treatment at the wrong time can do harm. Do your homework. We have to be our own best health advocates with our doctor working as a partner in our treatments. Ask questions, no matter how many you have.
Many find it helpful to keep an ongoing journal of their symptoms so they can share it with their doctor. Keeping a journal or a checklist of symptoms is especially helpful if you are getting botulinum toxin or taking medications. It helps doctors modify your treatments as needed.
I suggest keeping a symptom journal that highlights the problems you are having AND a wellness journal so you don’t lose focus on the positive things in your life. Your wellness journal should include your physical health as well as your mental, social, and spiritual health.
It can also be helpful to make videos of yourself showing your symptoms throughout the day because they may not manifest the same when you are in the office. Doctors need to see how our symptoms look at different times so they get a clearer picture into our lives. It will help them better treat you.
Remember that when you see your doctor, this is your time and your money. They work for us. Spend as much time as you need to have all your questions answered and health concerns addressed. Sadly, many doctors won’t give us much time. In this case, a little persistence from us may help. If not, I suggest finding a new doctor. If that is not possible, be as prepared as possible with all of your questions for that limited time you have with your doctor.
If after a visit you have a question, please call the office. I am not saying be a pushy pain, but sometimes we need to find out more to set our mind and body at ease. Plenty of doctors appreciate patients who are diligent about their health because they know it is conducive to better treatment outcomes.
I have been to so many doctors that I feel like a broken record telling my story over and over. Plus, my symptoms have changed over the past 20+ years. To make visits easier, I created a personal medical folder to bring to the doctor so I can share as much pertinent information about myself as possible so they have a clear picture into my life.
My medical folder includes pictures of me showing how my dystonia has changed over the years, all medical treatments I currently receive or have received, medications I am taking and have taken in the past (prescription and over the counter), nutritional supplements I take, allergies, and results from various tests (blood work, MRI, CT, x-rays). I also include a checklist of my symptoms and any changes I have had, as well as all other relevant information a doctor might need to better treat me.
It is important to go a step further by letting a family member and/or friend have access to your medical folder in case of an emergency. If you become incapacitated and someone needs to speak on your behalf, they can simply grab the folder and present it to the attending nurse or doctor. It is also helpful to get a medical ID card for your wallet or purse (and/or bracelet) to put your illness, medications, allergies, emergency contacts, and other pertinent information.
Taking a little time to get your medical information organized can pay dividends. It can make doctor visits far less laborious and it can help you in case of an emergency where this information could prove vital to doctors in order to treat you most effectively.
Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021). He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and writer for Chronic Illness Bloggers Network, The Mighty, and Patient Worthy. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.