How I Advocated for Myself When I Was Diagnosed with MS—And How It Changed My Life
I was diagnosed with Multiple Sclerosis, by accident. I had chronic lower back pain for years, and after months and months of every kind of specialist appointment you can think of, I was finally sent for an MRI of my lumbar spine. While my MRI didn’t reveal the source of my back pain, it did reveal one small lesion which would turn my world upside down.
After the first lesion on my spine was found, my doctor sent me to a neurologist who ordered three more sets of MRIs—of my thoracic spine, cervical spine and brain—along with contrast dye, which I was only told was necessary with no other information regarding the risks of putting it into my body. (Spoiler alert: It’s pretty toxic.) While I waited weeks to get these MRIs booked, I remember having a conversation with my Mom where I said, “I just want to know whatever it is that I have, so I can start medication right away.”
My Diagnosis And What I Did With It
That set of MRIs resulted in finding a handful of lesions on my brain. Given this MRI information, my neurologist was comfortable giving me a diagnosis of RIS MS: Radiologically Isolated Syndrome of Multiple Sclerosis.
I remember sitting in his office while he showed me all of the images of my brain, methodically pointing out each lesion, and letting me know that none of them were active. We discussed how I was currently feeling and if I could remember feeling any of the symptoms that come along with having MS such as tingling, numbness, fatigue and vision issues. I answered no to all of them. I was fatigued, sure, but what hospital Information Systems (IS) employee isn’t?
Working in hospital IS, especially the on clinical side of the software, I have sat in on many doctor/patient interactions, and I know the spiel: Patient tells doctor symptoms, doctor asks follow-up questions, doctor takes notes, then doctor prescribes medication. But what if I (the actual patient now) have no symptoms to tell? You can see why this entire scenario seems completely foreign and overwhelming to me.
My doctor handed me a list of medications and let me know a bit about them, like how they are administered and what my insurance would most likely cover for me. He asked me to take the list home, think about it and come back to him with a decision as to which one I wanted to take—as if it was a foregone conclusion.
We never once discussed nutrition.
I went to Boston for a second opinion. At the Elliot Lewis Center for MS, I got my confirmation. I also got a very similar list of medications to, “take home and study, then email when I make a decision.”
Having been to two MS specialists, they made it seem like my only option was medication.
Well, I ended up saying no to medication. The potential horrendous side effects (that I found online) paled in comparison to how “normal” and healthy I felt. However, what I did say yes to was doing my own research.
How I Treated My MS Symptoms With Nutrition
A simple Google search of, “MS and vegan” showed me the Swank Diet, a 50-year study on the effects of saturated fat and MS. Why hadn’t my doctor mentioned it? I would later find out it’s because he (and many other neurologists) doesn’t believe nutrition plays that big of a role in altering your disease path.
I had some pretty significant changes that first year post diagnosis. I developed Optic Neuritis after a particularly stressful day at work. I also had hand/feet tingling related to the heat. But I also completely changed my diet and lifestyle to a vegan/Swank diet. I trusted that my diet changes would affect me far more positively than medication ever could.
I got a set of follow-up MRIs almost a year after my diagnosis, and all of my lesions were gone. Food was in fact my cure, and I effectively halted my disease without putting any harmful medications into my body, potentially triggering new health issues. I healed myself essentially without the help of my doctor.
Now, I’m not saying all doctors’ advice is bad, and that all of them don’t have your best interests in mind, but Western medicine can be pretty funky, and sometimes a holistic approach is your very best bet. At the very least, it is an excellent supplementation to your treatment plan. The environment in which doctors are having discussions on holistic methods is changing, and it is slowly getting better, but there are many, many times where it can only help to be your biggest advocate and do your own research.
How to Advocate For Yourself In a Doctor’s Office
1. Take notes during your appointments.
No one will look at you weirdly for bringing a notebook and pen to an important appointment regarding your most precious possession: your health. If possible, take a family member or friend with you to do the task. You can review the notes later, when you are clearer headed, and less anxiety-ridden about being at your appointment.
2. Ask questions!
If your doctor is mentioning something without an explanation, speak up and ask for clarification. They’re there to educate as well, and if something does not make sense to you, they should be more than happy to explain it to you.
3. Know that it’s okay to say no.
If you aren’t comfortable agreeing to a treatment plan without thinking it over, then speak up. Sometimes you need some time to reflect in order to make the right decision.
4. Find online groups (Facebook in particular) for your disease or health issue.
This gives you the chance to discuss it with others in similar shoes. There will be those people who are newly diagnosed, those “veterans” who can tell you what their journey has been like, those on medications, and those who aren’t. The amount of knowledge and support you can receive when you find the right groups is immeasurable, not to mention that these groups will make you feel less alone in fighting for your health.
5. Do your research.
Google can be a scary place, so I definitely recommend only reading articles based on true scientific studies and evidence (not Yahoo question boards). Review your notes from your appointment and search for terms to get a better understanding of the things you talked about and the things your provider is suggesting you do. Create a list of follow-up questions for your next appointment.
I promise you, no one will care more about your health than you, so find your voice. Knowledge is power, so find your strength.
Interested in reading more about how food can be more than fuel? See how this woman used food to manage her endometriosis.