(Messages to) Health Care Professionals

Listen to us. We really, really know our body. We're stuck with it for hours upon hours. And we know when something's not right. And I'm lucky that I have a doctor that listens and will take it seriously. But I also remember growing up and hearing stories about Chronic Fatigue Syndrome, I think. And that doctors didn't believe them. And I did have some of that where at times, when I couldn't get in to see my neurologist and I had to just run to urgent care here, they kind of just would think that it's in my head. And so just making sure that listen to your patient, and believe them, is really important.

INTERVIEWER: Can you talk about if you had to give advice to health care professionals that you’ve interacted with, what would you tell them?   

Treat the person, not the disease.   

INTERVIEWER: And what does that mean? 

It means just because something works for one of your patients doesn't mean-- it's not going to work for every patient. We're all individuals. And listen to your patients. When we say this drug is not working, and the MRI shows that it's not working, and the symptoms show that it's not working, and the 25 timed tests shows that it's not working, it's not working. It’s time to move on. Even if you say you’re on the strongest drug there is and it’s not working, well, maybe we’ll try something that’s not as strong, and maybe it will work. It’s better than staying on a drug that’s not working. Do something. 

I think one of the, one of the key points I'd like to make for healthcare providers is, kind of understand that when you're speaking with a patient what they may be hearing is for the first time, but you've heard it over and over. You understand it, you know, it and they're hearing for the first time. And that processing takes a while, and it's not only, I’m not only talking about the diagnosis I'm talking about. Let's say you want your patient to go through some tests or try new medications, or go see a different doctor for something else. Understanding everything, and the ability to process it can't happen in the five last minutes of your appointment.

I would hope that doctors could learn to be more collaborative. So truly listening to the patients' wants, and needs, and lifestyles, and what they're willing to do. If you have a patient, asking them, "Hey, are you willing to update some diet and some physical stuff? Here's some recommendation," instead of relying on the patient to know to ask the doctor, "Is there anything dietary or physically that I can be doing?" I know, for me, it's very frustrating when the doctor's like, "Yeah, just increase your physical activity." And I'm like, "OK, well, what does that mean, and I don’t know what that means.” It’s hard. You have to find it on your own. So, I wish there was a way to complete the circle, instead of just saying, "Hey, you should do more exercise”, “Hey, you should do more exercise and if you don't know what that exercise is, let me recommend you to an OT or a PT that can help you on a fitness plan." Because I feel like a lot of people get stuck in that. Or, "Hey, you should really clean up your diet. If you don't know how to do that, let me recommend you to a dietician that can help work you through this." There's just a lot going on in your head, and expecting you to put together a functional diet and fitness plan, if you've never done that before, on top of dealing with MS, you're setting people up for failure. 

But it's also hard to have MS. And that patient that comes in, we're tired when we come in sometimes, because we've used all our energy just to get there. And so, I guess having patience. A little bit of humor helps. I've had my one doctor tell me-- because he was trying different meds with me and things like that, he said, “We're going to add something to the cocktail.” And just to lighten things up a little bit, I thought that was kind of funny. And I guess just trying to know the patient just as a person and not as something you learned about in med school. And, "Oh, and this is interesting. I learned about this in med school." That's a person. So that's probably would be like when you have it.

I think the one thing that healthcare providers, you know, aren’t aware of is, you know, the internal conflict that patients have in devoting costs in insurance. And I think something that might be helpful, particularly with MS patients, is, you know, prior to discussing medications, is maybe, you know, to have somebody at the office sit down with that patient. And maybe make some phone calls to your insurance company and maybe talk about some of the medications and the prices and kind of learn the protocol of how the step therapy works.

My advice would be we're all taught to approach a diagnosis based on the common presentation, and MS is such a broad disease with so many possible symptoms that I think it should be on your differential diagnosis when someone comes in with some weird neurologic complaints that don't necessarily make sense right off the bat. They're probably not faking it. People don't want to come to the hospital unless they really have to and think about MS because I've heard these horror stories of people who have had weird neurological complaints for like a decade, and they keep getting written off by health care professionals and saying, oh, they're probably just imagining it, or maybe it's stress, and then it ends up being a mess. And maybe if they had that diagnosis a decade earlier, there would have been a lot less pain and worry. So, I would, for health care professionals, keep it on the radar, and know that it looks different in every single person.

And I guess I would ask, are there current studies about secondary progressive MS that the exacerbating-remitting, I've been told, is easier to study. Because you could say, Mrs. Jones had 12 attacks last year. And with this medication, she has four attacks. So, it looks like things are getting better for-- this is great.  So that's fine. They can measure the concrete episodes that people have and what medications do or don't do for them. But with secondary progressive, I'm not aware of much that's done, partly because it's really hard to study. And in my case, everything has been so gradual that there's no way to say, well, this has made [NAME] able to do this. And she couldn't a few weeks ago before the medication, or a few months ago.  It's really hard to measure. And I think there hasn't been as much studies about secondary progressive MS.

What is the possibility of completely reversing the lesions? Do you see potential in that, within the next how many years? Do people get, is it true that people get better treatment with the more money they have? Like, I would just like, is this the best option, or are there better options that we don't know about? And then, well no, those are basically it. Like, I mean, it's kind of those generic, like, what if questions. Like what if, you know, you are able to reverse lesions? Would it be available for everybody? Like, you know, stuff like that, just basic stuff like that. 

I know in my heart that there will be a cure for MS. I would like to ask an MS expert how confident they are that there would be a cure, you know, in the next five to ten years. Yeah, that’s it. I want to know if, you know, I want to know how optimistic MS researchers are because I am. And I have to think that they have to be optimistic as well, just knowing that in 13 years, there are quadruple, you know, the amount of medications that are available now. So, there is major progress. So, yeah, what is it, what’s the missing piece, and how soon are they going to find it?