How Multiple Sclerosis Works from a Doctor and Patient Perspective

Ajouté : 2026-05-31

[00:00:00]Tell me what you know about multiple sclerosis. What is it? It's a mess.

[00:00:04]>> [laughter] >> It's MS, yeah. It is a mess and it is MS. So, when I'm explaining it to somebody, I kind of explain using the algorithm of a phone charger, right? So, you've got the plastic coating on the outside and the the wires in the inside are making everything operate correctly or that's what it should be doing. With MS, it's like an old phone cord. It breaks down, you know, the wires are going to be exposed and then things don't operate accordingly and you have a complete malfunction. Yeah. But it's basically it's my body attacking itself.

[00:00:34]Yeah, when you think about multiple sclerosis, and again, you have your brain, you have your spinal cord, right?

[00:00:38]So, you initiate a thought, that thought is going to go through your brain, through your spinal cord, and say you want your arm to move. And that nerve is going to innervate the muscle here and your arm is going to move, just like I'm doing right now. So, multiple sclerosis is is that nerve is wrapped in insulating material, just like that cell phone wire she was talking about. And so, for that signal to be conducted and to transmit all the way down to that muscle, it's got to travel really fast. What happens in multiple sclerosis is your body has developed white blood cells and antibodies that actually bind to that insulating material and attack it. And so, you get removal of that insulating material, so the signal can't reach that area. And so, you lose function of that nerve in that specific part of your brain or your body, wherever that lesion is, right? And so, individuals will be paralyzed momentarily or they won't be able to talk momentarily or they won't be able to do something momentarily because they have an abundant amount of white blood cells and their products in an area of the nerve that we call the myelin sheath, which is the insulating material that's being attacked, so that signal can't propagate. That's what multiple sclerosis actually is and it affects nearly 1 million people in the United States and it's twice as common in women when you're diagnosing autoimmune conditions. MS, interstitial lung disease, whatever the autoimmune condition is, you almost have to be arrogant in your diagnosing because you're going to give people treatment that manipulates their immune system in some kind of way and you have to be 100% sure this is the autoimmune disease that they have to be able to get them the correct therapy. So you understand that yeah, there's a little bit of risk associated with it in terms of infections and stuff. But you have to have a little bit of arrogance. And it sounds like Look, the neurologist at Kaiser is the one that diagnosed you and then you were able to find a clinician that you clicked with that allowed you to continue on therapy. Now, tell me, once you were diagnosed, you had MRIs which showed the lesions, right?

[00:02:39]>> No denying it.

[00:02:40]>> No denying it. And then what happened?

[00:02:43]What did they suggest? What did they start you on? What did they do?

[00:02:46]>> Right away with Kaiser, we started Rituxan. And then I think that was in October of 2019 and come January 2020, we switched insurances. And then I was on So 2020 I started Tysabri.

[00:03:00]And I loved it at first. My mobility was horrendous on it. We started seeing more muscle deterioration in my left leg, started using an AFO, was throwing myself in with canes. Every once in a while I'll still use a mobility scooter, you know, if we want to go to a theme park and it's 90° out, I'm not going to last past an hour. It's like somebody doesn't charge me and my batteries die. Yeah.

[00:03:24]And I want to enjoy more, you know? So I used to be Well, I don't want to do it.

[00:03:27]No, it's like if it is going to make my day easier, if it means riding an ostrich, sure. Find me one and I'll do it.

[00:03:35]>> get on it. But [laughter] every day you sort of have to reevaluate how you're going to feel. Is that >> Oh yeah. No, it requires a really, really keen sense of body awareness to be able to say, "Nope, I know that I'm only going to have this much energy in my bucket today, so no, I can't paint the house.