When My Doctor Didn’t Believe Me

By Alene L. Brennan, RYT

3 min read

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Gary Chester Member
Alene, you are justified to be upset with physicians who dismiss patient complaints and opinions. Yes, it was time for a second opinion. My wife Cathy, also a contributor here who has MS, recently switched from one excellent, caring specialist to another great one (we relocated). Her prior specialist interpreted her MRI without contrast to be a new lesion, raising the prospect of switching her DMD. Her new specialist ordered an MRI with contrast for a better look at things and he saw no meaningful changes (fortunately). So, she is staying with her current DMD. Thank you for reminding everyone that we are the experts of our own bodies.
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="Gary Chester" user-id="3993319"/> it's wonderful to "meet" you. I know your wife well. We've actually met for lunch before. I truly admire the tremendous amount of work that she has done and continues to do for the MS community. Thanks for your encouragement and reminder on the importance of finding a good neurologist. The story you shared about Cathy's experience is a perfect example of why we need to be advocates for ourselves. Switching DMDs is not a light decision. I'm so glad to hear that she is able to stay on her current medication. Thanks again for the note. - Alene, moderator
Seth Member
This is an all too familiar situation. It’s not right that you were shrugged off. You deserve some follow through as to what might be causing it. Especially for what they charge you and your insurance company. I just want doctors to be able to confidently say, “I don’t know”. Then, perhaps follow with some scientific curiosity… I hope you get to the bottom of this! 
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="Seth" user-id="4080887"/> thanks so much for taking the time to share some encouragement. I appreciate it. Too often we feel alone in experiences like this, but that couldn't be further from the truth - unfortunately. Yes, it can be refreshing sometimes for a doctor to acknowledge if they don't have an answer. For example, my MS neurologist could have said, "Hmm, that's interesting, I can't say that I have other patients respond to heat like that, but MS does surprise us sometime. We can certainly explore it together, but it would also really be helpful for you to talk with your headache specialist about this." It's the simply act of acknowledging a patient's experience and guiding them to the next best step. We can't expect doctors to be perfect, but I don't think a little better bedside manner was too much to ask in this scenario. Thanks again for the note, I appreciate it. - Alene, moderator
smario13 Member
I don’t have enough expletives for your neuro. Those migraines sound rough! I hope you find someone soon who can help you navigate what’s going on and what to do about it. Thank you so much for sharing this unfortunately too common experience!
1. Alene L. Brennan, RYT Moderator & Contributor
 Thanks for the support and encouragement. It's definitely frustrating when you feel dismissed, but it sure does feel good to connect with our community here of people who just get what it's like to be on the receiving end of this experience. We're all in this together. Alene, moderator
kwest51 Member
I find as a woman, I'm less visible to my GP. Thankfully, my neuro is a woman. But I can tell you, after years of being gaslit by my GP and no one taking my symptoms seriously, a bout of optic neuritis and a very compassionate ER doc got me the correct diagnosis of MS so I could start managing my symptoms.
1. Alene L. Brennan, RYT Moderator & Contributor
 Wow, that's disappointing but unfortunately not all that surprising to be dismissed by a doctor. I hope that you can explore another GP to work with. In the meantime, that's fantastic that you connected with such a great ER doc who was able to show compassion and validate your experience - and ultimately get you a proper diagnosis. It's amazing how connecting with a compassionate doctor who is willing to take the time with you to hear you out and just be present with you can change everything! - Alene, moderator 
2. Latoya.Juniel Moderator
 <inline-mention username="kwest51" user-id="4020523"/> I'm so glad you finally got in the right hands of someone who hears and sees you the way they should in order to provide you with the help you need to get yourself on a path to relief. Being gaslit is no fun and the mind games can have you questioning yourself in a way that's not good at all. I hope you are now managing quite well and I'm wishing you the best on your journey! Kindly, Latoya (Team Member)
f5hwo4 Member
Sounds like my life, I wasn't diagnosed until I was 55 but had symptoms since I was 21. My GP considered me a hypochondriac even though I had MS in my family. He finally sent me to a neuro because I have severe pain in my elbow and numbness in my arm. He was pretty sure I had nerve damage, I said maybe they will test me for MS while I was there. He said they can't do anything about it even if you have it. The neuro looked at my history and said he was testing me for MS and nerve damage. He was pretty sure I had MS. When I was diagnose I was almost relieved, I stupidly thought now a doctor will believe me and help. When I told my NEW! GP about a problem she would tell me that it sounded like a MS problem I would have to speak to my neuro. I would meet with my neuro and he would tell me it sounds like a problem I should see my GP about it. I told him I had already seen her and he told me to go back to her. There is a shortage of doctors in our area, it takes years on a list. Your new doctor may not be any better. Denice 
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="Latoya.Juniel" user-id="8451663"/> it's true, it happens all too much. You simply want someone to take ownership of helping you through your health struggles, but instead they ship you out as someone else's problem. That's what it can feel like at least. I feel like in situations like that, I'm inclined to say "I understand that you feel my primary should be addressing it, but they're saying that it needs to be addressed by a neurologist. I feel stuck in the middle and I'm really struggling to get answers and relief. What would you do if you were in my situation. I really need some guidance." Sometimes it helps, I always find it worth the try! - Alene, moderator 
2. Latoya.Juniel Moderator
 <inline-mention username="Alene L. Brennan, RYT" user-id="6784970"/> I really like your response when it comes to communicating your frustrations between doctors. Putting them in the hot seat to see the situation from your shoes is a great way to make them truly understand where you're coming from because they know if it were them they would feel the same way. And that's what it's about, full transparency and empathy. Thank you so much for sharing that piece of advice with us! Kindly, Latoya (Team Member)
Alene L. Brennan, RYT Moderator & Contributor
<inline-mention username="f5hwo4" user-id="3977349"/> I'm sorry to hear that you struggled with symptoms for so many years. I was told that 1 in 4 people who ultimately go on to get diagnosed with an autoimmune disease were once labeled hypochondriacs. It's disturbing but the more you talk to people in our community the more people validate this unfortunate experience. It's wild to hear that was the case for you even with a family history of MS. And, yes, it's interesting how validating a diagnosis can then become. It's not a diagnosis that you wanted to have, but you clearly knew something wasn't right and you now had a medical diagnosis to prove it. Well I certainly hope that you're able to connect with better doctors moving forward. Stay connected with this community here so that we can continue to support one another and cheer each other on. - Alene, moderator
weezy13 Member
Alene I have had a similar situation with a ER physician when I was having a exacerbation and wanted to get IV steroids to treat my symptoms. But he didn't believe that I was having symptoms related to MS. In his experience all patients with exacerbation all experienced pain which I wasn't. He finally agreed with me and I received the steroids and my symptoms resolved but it was very stressful. Thanks for sharing. Louise Burns 
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="weezy13" user-id="4028810"/> that's frustrating when stress is added to an already stressful situation! I'm glad to hear that you were eventually able to get the medication that you needed and even more so - the relief that you needed. Thanks for sharing your experience and for the reminder that speaking up and being a strong advocate for yourself is important. We all stand stronger together, being part of this community here. - Alene, moderator
Trasor10 Member
Lawd! I went to specialist for 7 yrs from cancer to urologist and all in between until I finally started going to a shrink bc the doctors said “it’s all in your head”. I finally woke up in the middle of the night with everything upside down. EMS came bc it was awful and they FINALLY did an MRI and the MS lit up like a Xmas tree in my brain. I think bc there isn’t much knowledge about MS and bc so many people have such different symptoms that most docs are at a loss when you go to them with urinary issues or weak legs or weird vertigo. 
1. Erin Rush Community Admin
 Good grief, <inline-mention username="Trasor10" user-id="6901593"/>! What a nightmare! And, funnily enough, many of our members have joked, "Well, it IS all in my head, but not the way that doctor meant it!" Obviously, MS can be in any part of the central nervous system, but I think you get the point. I am so sorry you went through all of that. Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member. 
2. Alene L. Brennan, RYT Moderator & Contributor
 My goodness that sounds like quiet an ordeal! I'm sorry to hear that you had to go through so much stress over such a long period of time. Seven years! My goodness, that's a long time to be feeling unheard and ultimately undiagnosed. You make a good point, that MS isn't always top of mind when a patient comes in with urinary issues or weak legs or vertigo. I suppose there could be so many other reasons behind the symptoms. It would be great if there was more awareness around MS because my its nature, it's such a unique experience for each person, so it can be hard to diagnose. It should be on the list to check though. I'm glad that you ultimately go the diagnosis that you needed, and I'm equally glad that you found this community here. It's a great place to support one another and remind us that we're not alone on this crazy journey with MS. - Alene, moderator
Trasor10 Member
Listen, after all of that for my when they said “you have MS” it was a blessing. Now I know what it is and now I can finally deal with it. And yes. It is definitely all in my head. Lol. How true that statement was. 😉
Alene L. Brennan, RYT Moderator & Contributor
<inline-mention username="Trasor10" user-id="6901593"/> I'm sure it was a great relief! And it's true, it was all in your head - literally! 😀 Alene, moderator

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