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Whether I’m sitting in my doctor’s office or on my laptop having a telehealth appointment I wonder if my needs are being met. I wonder if I’m being heard. As I look squarely in their face, their eyes, I wonder, are you listening? I’m face-to-face with you. Do you hear me? I see you’re making notes, but yet you’re not looking me in the eye. Are your notes for your own benefit or mine? I look at my patient portal and it seems our conversation differs between the doctor and I, and things differ from what actually took place. One of my appointment notes said, “Mary does not want to start taking another MS DMT at this time.” She omitted the reasons as to why. My reasons were because of the excruciating side-effects and my need for my body to heal before starting a new drug. 

Where is the truth, the relationship between you and me? Things are left out of our visit and it doesn’t serve me well. The doctor/patient relationship is extremely important. I cannot allow any dismissal of my feelings or symptoms. 

I’ll never forget suffering severe gastrointestinal issues because of certain meds and crying over it with my doctor. She rolled her eyes and told me to see a gastroenterologist and she also asked when I last saw a psychiatrist because I was in tears. My mother was with me on that appointment and we just looked at each other in shock. I was dismissed. That is putting things lightly. 

Too often I see others in my online support groups who don’t know any better than to trust their doctors and resign to their recommendations without conversation. It’s important we have full understanding and conversation as to what’s going on with our MS, our scans and the medications we take. 

To make the most of our appointments we must do the following:

• Be your own advocate – don’t’ let doctors rush you out of your appointments.
• Telehealth – Use this platform if and when necessary
• Patient Portals (MyChart and otherwise)
• Messages/texts, lab results, appointment reminders
• Make notes before, during, and after appointments
• Bring notes with you to appointments
• Keep a diary of symptoms 
• Update any medical changes, new and deleted drugs and OTC medications and supplements
• Express concerns
• Ask questions 
• Ask to clarify labs and other diagnostics – MRIs
• Firing your doctor – switching physicians: This can be easier said than done, but it can be done.

Tell your story. Tell it often!
1. Tell your whole story
2. Assert yourself in the doctor’s thought process – participate
3. Partner in the decision-making process
4. Integrate diagnosis into the healing and wellness process

• How and when did your symptoms start?
• What do your symptoms feel like? Have they occurred before?
• What were you doing at the time and how did you notice the symptoms?
• How have your symptoms changed and over what time period?
• How have symptoms affected your day-to-day life?
• What has helped/worsened your symptoms?
• Are there any new symptoms?

Medical History:

• Have there been any changes in your medical history? New diagnoses?
• Any changes to your medications? Have you stopped any meds?

Lifestyle:

• Any changes to smoking, alcohol, or drugs?
• Current living situation – Any changes?
• Any life stressors?

Discuss Your Differential Diagnosis:

• What are you most concerned about?
• What else do you think this could be (process of elimination)?

Use your own words. Be your own advocate and speak up. Don’t allow interruptions, finish your train of thought. Interrupt if you don’t feel you’re being heard.