When My Doctor Didn’t Believe Me
Last updated: September 2023
Multiple sclerosis is known as the “snowflake disease” for good reason. It affects each of us differently. We may have the same diagnosis in our medical charts, but how it affects my body, and my life may be completely opposite to you. It’s a known fact in the MS community.
Why then, do so many of us, struggle to get our doctors to believe us about the symptoms that we’re experiencing from MS? Too often, our concerns are dismissed, and we’re left without proper direction to manage them.
My heat-related MS migraines
For me, it’s my heat intolerance. When I’m triggered by heat, I will get an excruciating headache that doesn’t respond to any of my normal migraine medication and doesn’t let up for a week.
I’m no stranger to migraines, I’ve been experiencing them since elementary school. So, I am intimately familiar with how my body responds to “normal” migraines. This is not a normal migraine. This experience started around the time of my MS diagnosis and is only triggered by heat.
I’m confident it’s related to MS because the heat that triggers is just that slight elevation of my internal body temperature. I’m not talking about getting a headache because I was outside on a hot summer day. I’m talking about not even breaking a sweat.
Slight triggers and long-lasting symptoms
You know that annoying one to two degrees difference that could make all the difference for us? It could be from having the oven on in the kitchen or sitting too close to a fireplace or going for a short walk around the block.
I understand that what makes my response to heat intolerance different from the “average” MS experience – which we know there is not average experience – is the fact that the effects last for up to 10 days. It seems to be more common with MS heat intolerance that once the body’s temperature cools down, the symptoms go away. But again, that’s not my experience. Once it’s triggered, I’m wiped out for the next week.
My discussion with my doctor
I’m well aware that this doesn’t fit in the traditional box of MS heat intolerance but it is still my experience. I needed my doctor to help me navigate it. So as I had an upcoming appointment, I prepared my questions and was hopeful that he could offer me some relief. I described my experience, anxiously awaiting some answers.
He immediately said, "That’s not MS. You need to talk to a neurologist about migraines." He didn’t even look up from my chart as he said it and proceeded to switch topics.
I was speechless.
Why isn't my doctor listening to me about my MS symptoms?
First off, isn’t he a neurologist? I understand he may specialize in MS, but couldn’t he speak to it at all?
Secondly, where is the compassion or even respect to at least make eye contact with the person you’re speaking with, especially when they’re struggling and turning to you for help.
Lastly, I disagreed that it wasn’t MS related. These style headaches only started since my MS diagnosis, and they don’t respond to any of my migraine medicine. Wasn’t it at least worth a conversation?
My doctor clearly shut the conversation down without any discussion. Honestly, I’m insulted and annoyed by it. It’s not the professional care that we deserve from our doctors.
Jumping through hoops
Now I have to add yet another doctor to my roster now – a neurologist who is a headache specialist. And as much as I hate to be cynical, there’s a strong possibility that the headache specialist will just tell me that it’s MS related and I need to speak with my MS doctor about it. Oh, the tailspin we get put in!
And of course, the kicker, is that the wait to be seen as a new patient for the headache specialist is months long, so I suppose I’ll just sit in my bubble in the waiting.
We all deserve validation
My fellow MS friends, I share this story not to stir the pot on an already irritating experience that virtually all of us have living with MS. I share this to remind us all that just because we don’t always get the confirmation or validation that we hope for from our doctors, doesn’t mean that our experience isn’t real.
The doctor may be the clinical expert, we are the experts of our unique body and its unique experience with MS.
Keep holding strong, ask the questions, get second opinions and most of all know that you are not alone in this journey. We are all in this together. To help us all learn from each other, I’m curious to know, how do you handle it when your doctor doesn’t believe your unique experience with MS? Please share below.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: