A Simple Hack to Access Better Treatment by Doctors

Jessie Ace avatar

by Jessie Ace |

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31 Days of MS, MS episode, certainty, gratitude, unique, symptoms, the circle, affirmations, fatigue, depression, progress, presentable, disclose, dog, temperature, end of the year, uncertainty, online community, conflict, bloated, enabled, caffeine

“What was the date of your last relapse?” the neurologist asked while peering over her glasses at me. 

I stared back blankly and then shrugged with a sheepish smile. I knew the year but couldn’t remember the exact date because it was seven years ago!

“What symptoms did you have just before your relapse?” she asked. 

“Erm,” I replied, pursing my brow. She tapped her pen on my pile of medical notes and waited. 

“The relapse happened seven years ago, how am I supposed to remember this?” I thought.

Something like this always happens when I go to my neurologist’s office. I always forget to study for my annual medical history pop quiz. I’d been meaning to write down some things and bring them with me, but I forgot.

The week before an appointment, I always mentally note things to mention during an appointment, such as brain fog, weakness, pain, or fatigue I may have experienced. But I’d end up in the waiting room with everything wiped from my brain.

I used to feel so annoyed that this medical pop quiz happened every time I had an appointment, until it occurred to me why it happened. The reality is that doctors don’t have time to read all of your notes before an appointment. How can they? 

Doctors are slammed with patients back-to-back all day, every day. During our 15-minute slot, they rely on us to tell them accurate information.

Following are some example notes I made about my symptoms:

“11 a.m., left hand feels tingly”

“Noon, feeling down” 

“4 p.m., pain in my right toe”

“8:15 p.m., ate an apple and now have numbness in leg”

“8:30 p.m., realized the leg was numb because I was sitting funny”

It dawned on me that I was not helping my doctor by taking a notebook full of scribbles that they had no time to read. It’s no wonder why I wasn’t being taken seriously and my symptoms were being ignored. 

How could a doctor do her job and give me the best possible care when she don’t know all the facts? I was taking up her time and being unhelpful. That didn’t sit right with me, so in true Jess fashion, I decided to do something about it. 

I really got into bullet journaling and came up with a medical history quick sheet (so I didn’t have to remember all of the information). I started making tracker sheets for symptoms, food, exercising and goals, menstrual cycles, and everything else I could think of that might be making my symptoms worse. 

What foods trigger your symptoms? I realized how much sugar and processed food affect mine.

I sent out my sheets to the warriors in our ENabled Warriors Facebook Tribe, and they loved them. I asked myself, “How could they also be helpful for doctors?”

Luckily, I’d interviewed some doctors on my podcast and got their thoughts. Together, we tweaked and tweaked the material to make it the best it could be. It eventually became the basis of my first published book! And I’m very excited to help even more warriors like me who are having the same problems I did. 

Tracking symptoms in a book is important for me. I don’t trust health apps. I don’t think they’re secure, and I don’t know who is seeing my personal and private details. 

If you want to track your symptoms, instantly spot your triggers, and give accurate info to your medical team, I suggest making tracker sheets. Or, if you’d like to make things easier, learn more about my book here.

Next time I see my neurologist, I will be armed and ready with accurate info and answers to the quiz! I’m actually excited about it rather than nervous. 

Are your appointments like this, too? Share your thoughts in the comments below. 

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

JoEllen Hoelting avatar

JoEllen Hoelting

Does MS have zoom exercises similar to Silver Sneakers that I can work out with? Most Silver Sneakers classes move too fast for me due to fear of falling.

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Jessie Ace avatar

Jessie Ace

Hi JoEllen, I wouldn't be able to tell you, unfortunately. I'm not even sure what Silver Sneakers is :( hope you find something soon though, I've been doing Yoga classes on Youtube if that helps? Hope you find something soon, #StayENabled you got this.

Reply
Dale Walters avatar

Dale Walters

I’m a little foggy at my appointment but have taken a few notes of issues to inform my doc. I have ppms so is always a constant battle. I take plenty of meds and know this is for the rest of my life so I wonder why do I bother with another appointment. I do the Ocrevus treatment that seems to keep me stable so why waste hers and my time? Life goes on.

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Jessie Ace avatar

Jessie Ace

Sometimes they see things we don't see and they'll want to be monitoring you just to make sure. You can't read the label when you're inside the jar, right? In other words, they will see things from an outside perspective. #StayENabled Dale, you got this!

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Charles Lumia avatar

Charles Lumia

Lol that leg numbness note was hilarious so there's that at least :D

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Jessie Ace avatar

Jessie Ace

It made me laugh when I found it in my old notebook too - had to include it! Haha!

Reply
Donna Bird avatar

Donna Bird

All my Dr. Cares about is putting me on Disease modifying drugs. He didn't care much about anything else except brokering me out to other Dr.s that put me in debt. I've been reading and trying to naturally do it myself. Even the Integrated doctor was brokering me out. I have bills over an inch high.

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Jessie Ace avatar

Jessie Ace

That sucks Donna, hope you find something that helps you soon. #StayENabled

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