Letter to Neurologists from an MS Patient

Patient Expert
Liz West

Dear Neurologists,

I remember the first time I was referred to a neurologist. It was before I was diagnosed with MS and I couldn’t figure out why my family doctor was referring me to a brain doctor when I had numbness in my legs. Looking back, the medical team around me knew what was going on. However, without an official diagnosis, no one could tell me that those steroid infusions were protocol for an MS flare; that MRIs and lumbar punctures were standard in diagnosing MS; and that, yes, I did need to see a brain doctor because the numbness in my legs actually started somewhere else.

I didn’t know anything about MS at the time. I realize now that I actually had an unusual story in that I was diagnosed shortly after my first flare, without years of unexplained symptoms. I’m one of the lucky ones, I guess. I’m writing you today because there are a few things that I wish had gone differently during my diagnosis, and I have some requests that I’ve compiled in my decade-plus of being an MS patient.

Patients can handle tough information

Keeping a patient in the dark doesn’t help them. I understand that throwing around an MS diagnosis before you’ve confirmed it could cause unnecessary panic in a patient, but doing endless testing and waiting long periods of time to give the results does the same thing. It’s ok to tell a patient you’re thinking it could be a few different things, but you’re not sure yet.

Most patients feel relief once they know their diagnosis. For me, the fact that I was receiving typical treatments for MS before I even knew I had MS was really frustrating and devastating once I found out. My doctor knew what I had, was treating me for it, but did not disclose that to me until my testing was done. I think he could have done better.

Educate after a diagnosis

I’m going to take an educated guess that the general public does not know what MS actually is. Most have heard of multiple sclerosis but many don’t really know the details. I know I didn’t. When sharing a diagnosis, please remember how important education is from the very second you deliver that diagnosis.

I was 21 years old when I was diagnosed. I was in an exam room when my doctor walked in, looked at the chart and said, “You have multiple sclerosis.” There was a very pregnant pause. That was it. He didn’t say anything else. The first thing I said was, “Am I going to die?” This should have been a red flag to the doctor that I had no idea what he just said to me, and I would need some education about MS.

But I didn’t get that. Instead, he handed me tote bags from four different drug companies, telling me to do some reading about the meds and to pick my own drug.

When sharing a diagnosis, please remember how important education is from the very second you deliver that diagnosis.

I repeat: He told the new MS patient, who was clearly uneducated, to pick her own medication without any information besides the pamphlets produced by the drug companies themselves.

Patients are depending on you for information, guidance, and a little bit of compassion in these moments. It may take longer than the 15 minutes you’ve allotted for that patient, but going forward, it will make a huge difference in the way that patient sees their own future.

We’re always second-guessing

As a patient, I am well aware that my MS is different than everyone else’s, which makes it hard for me to understand whether something I’m experiencing is MS related or not. There is no guidebook called “Jackie’s Specific Case of MS.” I am regularly second-guessing myself, what I feel, and if my symptoms warrant a call to the nurse. I’m not sure if the numbness in my toes is because of MS or because I wore high heels last night. It’s a toss-up.

I am 12 years in and I still have a hard time distinguishing between MS stuff and normal life stuff. My request for you is when a patient presents with something that you know for certain is not MS, don’t brush them off or belittle them. We’re just trying to learn as much as we can, and really, help you do your job better.

An MS symptom could literally be anything, anywhere on the body, at any time, which I’m sure is overwhelming for you. However, there’s a large sense of fear and responsibility attached to that as a patient. What if I blow off this symptom because I think it's not a big deal, and it turns out to be something serious? It’s a lot of pressure on a patient to think we’re the only one who can identify our unique version of MS, so we’re just asking for a bit of extra information while we try to figure it all out.

Relapses are a big deal

It should go without saying that a relapse is a big deal to an MS patient, so please treat it as such. Maybe this particular relapse was a bad one, or maybe it’s not showing any signs of permanent damage, but it’s a reminder to that patient that they are not in control of their own body. We want to see a sense of urgency and concern from our neurologist. We’re not just damaged myelin, or cervical spine lesions. We’re people, too, and we need our doctors to trust us and to take our concerns seriously.

I know you have a really hard job. I’m sure it isn’t easy to treat a disease that looks different in every patient you see, but there had to be a reason you chose neurology. Maybe it’s the mystery cases, or helping someone regain lost function in their body. Whatever it was, neurology excites you and we’re depending on your excitement and curiosity to keep us healthy. It’s a big job that you have, but I’m forever grateful that you chose to do it.

Sincerely,

Jackie, Your Average MS Patient