I’ve heard of bunch of sayings over the years. “A good man is hard to find.” “Good help is hard to find.” But I say “a good doctor is hardest to find” especially when you have a rare autoimmune disease like myasthenia gravis (MG).
I can not stress the importance of having a good doctor to help you navigate these murky waters. Words cannot express the feeling when you know that your doctor is fighting with you and against you to help you have a better quality of life.
My Struggle
When I was first diagnosed it was through a general neurologist. While he was competent and knowledgeable enough to properly diagnose me, his bedside manner left a lot to be desired. A LOT. His treatment plan was just to give me mestinon and send me on my way. That wasn’t good enough for me (or my mom who found my specialist).
I 10000% do not believe I would be managing as well as I am right now if it wasn’t for me finding Dr Katz. With the general neurologist I was Alice in Wonderland spiraling down the rabbit hole. Once I found my specialist I’ve been more like Dorothy trekking down the yellow brick road.
Morg’s Good Doctor Checklist
Knowledgeable
- Depending on what kind of health insurance you have you may not be able to find a specialist but you should at least try to find a doctor who is very well versed in your disease. Not to down play general doctors but a specialist gives you tailored care. They are more prone to keep up with all the latest research and studies relating to that disease in order to give the best care possible. With a general doctor, there’s just so many diseases manage so while they know the basics, the buck stops there.
A Good Listener
- When you have concerns does the doctor genuinely listen to you and take what you are expressing into consideration? There are doctors who will listen to you complain about a particular symptoms for months but negate it because its not “known” to be a symptom of your disease. Is your treatment plan tailored to you and your lifestyle or has that been decided without your input? Do you feel heard?
Bedside Manner / Patient service mindset
- I often wonder if there is a class doctors have to take strictly dedicated to bedside manner. If such a class doesn’t exist, it should. Nothing grinds my gears more than going to the doctors office, arriving on time and left waiting in the waiting room for 30-45min then waiting in the room for another 10-15min. Then when the doctor enters the rooms would spend 5min max with me, never making eye contact or taking the time to discuss my ailments in depth.
- Also, when you’re dealing with serious issues like incurable autoimmune diseases, terminal diseases, etc, there is a certain level of couth the doctor needs to have while delivering that type of news and explaining next steps. Nonchalant won’t cut it here buddy.
- When I see my specialist, I’ve never been left waiting longer the 5 min. My appointments are about 15-20 min. He isn’t overbooked. We go over the routine checks and then we sit and talk about everything. He’s not distracted. He’s present and encourages questions and dialog. I always leave feeling heard and understood. In case you couldn’t tell I’m pretty happy with my specialist.
The most important thing is that you feel comfortable with your doctor. Y’all have to be on the same page and develop a bond. It’s not like my MG is going anywhere so barring either of us relocating out of state, I don’t see this relationship ending anytime soon.
So if you currently aren’t getting what you need from your doctor, find another one! Here’s a list of MG specialists It’s not an all encompassing list but hopefully one on here is near you. The point is you don’t have to settle. This is your health and you have a say in who has the honor of assisting you on this journey.
xoxo
