WEBVTT - Ep 92 Multiple Sclerosis: Scarred nerves & skating saints 0:00:02.600 --> 0:00:05.880 My name is Nikki and I was diagnosed with multiple 0:00:05.880 --> 0:00:09.520 sclerosis in two thousand and seven, when I was twenty 0:00:09.560 --> 0:00:14.520 seven years old. The silver lining to my diagnosis is 0:00:14.560 --> 0:00:17.280 that I was lucky enough that my GP found it 0:00:17.960 --> 0:00:20.680 when she did, because it was by complete peer accident. 0:00:21.360 --> 0:00:24.200 Had she not discovered it when she did, I probably 0:00:24.239 --> 0:00:28.200 wouldn't have shown any symptoms for about a decade later, 0:00:28.400 --> 0:00:32.640 and my condition would have been obviously worse than it was. 0:00:32.680 --> 0:00:37.280 At that time. I was just having horrible headaches, which 0:00:37.360 --> 0:00:40.839 is not has anything to do with MS. So she 0:00:41.000 --> 0:00:44.840 sent me for an MRI and I did the test 0:00:44.920 --> 0:00:48.040 and she called me the very same day. And the 0:00:48.080 --> 0:00:50.360 fact that she called me the very same day, I 0:00:50.440 --> 0:00:54.800 was like, Oh God, what's happening. Something really bad is 0:00:54.840 --> 0:00:59.840 going on. And she's like, you know, best case scenario, 0:01:00.480 --> 0:01:04.320 you might have migraines. She goes, worst case scenario, I 0:01:04.360 --> 0:01:08.880 think you might have multiple sclerosis. So now I'm really 0:01:08.920 --> 0:01:12.560 panicking because I'm twenty seven years old. I don't know 0:01:12.600 --> 0:01:16.360 anything about multiple sclerosis. I know it exists, you know 0:01:16.800 --> 0:01:19.880 from the media and the famous people that you here 0:01:20.040 --> 0:01:24.640 have it. Now I'm thinking I'm going to die and 0:01:25.480 --> 0:01:29.880 I'm twenty seven I haven't lived the life that everybody 0:01:29.959 --> 0:01:31.760 gets to live. I am I going to get be 0:01:31.800 --> 0:01:32.720 able to get married? 0:01:32.800 --> 0:01:33.039 Am I? 0:01:33.280 --> 0:01:34.479 You know what's going to happen. 0:01:35.720 --> 0:01:38.120 So then to determine whether or. 0:01:38.120 --> 0:01:41.080 Not I really had multiple sclerosis, I went through a 0:01:41.160 --> 0:01:45.200 battery of tests over probably the next four or five months. 0:01:45.840 --> 0:01:49.520 And if you've never had a spinal tap, let me 0:01:49.600 --> 0:01:53.360 tell you they are the world's worst creation. There's nothing 0:01:53.480 --> 0:01:57.480 positive I can say about spinal taps. I hope nobody 0:01:57.480 --> 0:02:00.640 ever has to have one. But after all that was 0:02:00.640 --> 0:02:02.680 said and done, it was pretty much one hundred percent 0:02:03.240 --> 0:02:07.760 certainty that I had multiple sclerosis, and so I kind 0:02:07.800 --> 0:02:11.559 of had to digest that and face my own mortality. 0:02:12.880 --> 0:02:18.240 It's hard to kind of grasp the concept that your 0:02:18.360 --> 0:02:21.560 lifespan is going to be shortened. We all know we're 0:02:21.560 --> 0:02:26.560 going to die, but we it's off in the far future. 0:02:27.440 --> 0:02:29.359 We don't think about it on the day to day. 0:02:29.360 --> 0:02:31.760 We don't grasp it. It's not something we worry about. 0:02:31.880 --> 0:02:36.120 But at that point, my death seemed to be right 0:02:36.160 --> 0:02:40.800 around the corner, and it was very scary, and feelings 0:02:40.840 --> 0:02:44.160 of depression and helplessness kind of took over, and I 0:02:44.240 --> 0:02:47.160 was just not in a good place in my head 0:02:47.440 --> 0:02:49.560 just thinking about how all of this was going to 0:02:49.600 --> 0:02:54.160 play out. But I did end up finding a fabulous 0:02:54.320 --> 0:02:59.080 multiple sclerosa specialist, and he is the best thing that 0:02:59.120 --> 0:03:01.799 I could have ever hoped or and honestly I can 0:03:01.840 --> 0:03:05.320 say without him, I would not be here talking with 0:03:05.400 --> 0:03:09.840 you today. So over the next nine years, it took 0:03:09.919 --> 0:03:13.000 that long to find a medication that I would respond to. 0:03:14.040 --> 0:03:18.799 We tried everything. My body will either reject or not 0:03:18.960 --> 0:03:24.360 respond to lots of different medications, So with the choral medications, 0:03:25.400 --> 0:03:29.120 I just went into complete allergic reactions on every single 0:03:29.160 --> 0:03:31.360 one and it was just not going to be able 0:03:31.480 --> 0:03:36.160 to happen to stay on it. So then there's the 0:03:37.080 --> 0:03:42.200 self injectable medications, but they would burn when they would 0:03:42.280 --> 0:03:45.400 go in, and I ended up creating a lot of 0:03:45.440 --> 0:03:48.160 scar tissue around my body from where I had to 0:03:48.240 --> 0:03:52.000 inject because there's only so much skin areas you can 0:03:52.000 --> 0:03:55.560 put them into. But when we were doing MRIs, because 0:03:55.960 --> 0:03:58.200 each drug that you go through you have to wait 0:03:58.240 --> 0:04:00.840 about six to eight months to see if they actually work, 0:04:01.560 --> 0:04:04.880 the self injectable medications did not stop any of the 0:04:04.920 --> 0:04:08.520 progression of the disease. At this point, Like I said, 0:04:08.520 --> 0:04:13.280 it had been nine years and I was just still 0:04:13.360 --> 0:04:19.039 progressing and falling down this horrible hole, and my prognosis 0:04:19.120 --> 0:04:22.279 was really grim. At that point, we didn't really know 0:04:23.200 --> 0:04:25.640 if I was going to respond to anything or if 0:04:25.680 --> 0:04:29.960 I was just needed to prepare myself and get my 0:04:30.160 --> 0:04:34.760 affairs in order type of thing. But God loved my 0:04:34.839 --> 0:04:37.880 specialists because you did not give up on me. And 0:04:38.200 --> 0:04:42.680 there are infused medications. So I've actually been on an 0:04:42.680 --> 0:04:46.239 infused medication now for five years and it is working, 0:04:46.520 --> 0:04:50.200 which is fabulous. It really has slowed the progression of 0:04:50.240 --> 0:04:56.800 the disease. The downside of my infusions one is the cost. 0:04:57.480 --> 0:05:03.400 My infusion is about seventh dollars a month, and had 0:05:04.560 --> 0:05:08.320 I not had insurance, there would be no way for 0:05:08.360 --> 0:05:12.480 me to receive this medication that would save my life. 0:05:12.560 --> 0:05:18.120 I would have to just die because you can't afford 0:05:18.240 --> 0:05:22.960 seven thousand dollars a month. Also, with my medication, I 0:05:23.040 --> 0:05:27.520 get very tired, like the day before and the day 0:05:27.600 --> 0:05:30.320 of I'm tired, and sort of the day after I'm tired. 0:05:30.360 --> 0:05:33.600 So it's good like forty eight hours to seventy two 0:05:33.680 --> 0:05:36.880 hours where I'm kind of just have to be still 0:05:37.080 --> 0:05:41.800 and relax. My body just doesn't function. And the last 0:05:41.800 --> 0:05:45.720 thing that's kind of scary about my infusions is it 0:05:45.920 --> 0:05:50.560 interacts negatively with something called the JC virus, which we 0:05:50.600 --> 0:05:53.520 all have, most of us have in our brains, but 0:05:54.080 --> 0:05:58.240 nothing really happens with it because it's never really activated. 0:05:58.320 --> 0:06:02.440 But this drug will activate it. And when it is 0:06:02.520 --> 0:06:08.039 activated and you're on this medication, your risk for PML 0:06:08.839 --> 0:06:12.600 goes right up, which is a really long medical term, 0:06:12.880 --> 0:06:17.560 but basically it's a brain infection that can cause death. 0:06:17.960 --> 0:06:20.919 So that's kind of scary. Every time I sit in 0:06:20.920 --> 0:06:24.320 the chair once a month, going is this the day? 0:06:24.520 --> 0:06:27.920 I don't know. Since it took such a long time 0:06:28.240 --> 0:06:30.880 for me to find the medication that would help me, 0:06:31.720 --> 0:06:35.680 I had gone from the beginning stages of MS to 0:06:35.800 --> 0:06:39.320 the secondary stages of MS. What that means is I 0:06:39.360 --> 0:06:44.279 don't have flare ups anymore. My conditions and my symptoms 0:06:44.360 --> 0:06:47.880 are with me every day, all the time. Nothing changes. 0:06:48.320 --> 0:06:53.520 So my motor nerves are what's mostly affected, and so 0:06:53.720 --> 0:06:57.560 my coordination's off, my balance is off. I trip and 0:06:57.720 --> 0:07:01.279 fall a lot, and a lot of people get. 0:07:01.160 --> 0:07:04.200 Uncomfortable when that happens, because I don't think a lot 0:07:04.240 --> 0:07:05.080 of people are. 0:07:05.120 --> 0:07:08.040 Used to seeing someone just fall flat on their face 0:07:08.120 --> 0:07:13.680 and start laughing. So I'm definitely was a klutz before MS, 0:07:13.800 --> 0:07:17.920 but now have really shined in that area. I also 0:07:18.040 --> 0:07:22.040 have a lot of numbness and tingling in my hands 0:07:22.040 --> 0:07:26.960 and my feet they shake sometimes. Sometimes the numbness gets 0:07:26.960 --> 0:07:29.320 so bad I have to look down at the ground 0:07:29.480 --> 0:07:33.840 to actually make sure that I'm standing i can't feel it, 0:07:34.600 --> 0:07:36.680 or I have to look down at my hands to 0:07:36.720 --> 0:07:40.960 see if I'm holding something because I just can't feel 0:07:41.560 --> 0:07:44.880 the nerve endings at the end of my fingers. It 0:07:44.960 --> 0:07:47.559 just isn't there. I get tired a lot. 0:07:47.720 --> 0:07:51.040 I lose motivation to do things just because my body 0:07:51.120 --> 0:07:56.240 is so exhausted. Recently, I've started slurring my speech a 0:07:56.280 --> 0:07:59.520 little because my tongue just can't keep up with my 0:07:59.600 --> 0:08:03.840 brain impulses. So it sort of sounds like I'm drunk 0:08:04.560 --> 0:08:08.280 and trying to explain to people that I'm not drunk. 0:08:09.160 --> 0:08:12.760 When they think I am, they don't really listen because 0:08:12.760 --> 0:08:15.360 they're like, yeah, no, you're just wasted. I'm like, no, 0:08:15.400 --> 0:08:17.800 it's two o'clock in the afternoon. I'm just trying to 0:08:17.840 --> 0:08:22.840 explain to you what's happening. But I would have to 0:08:22.840 --> 0:08:26.120 say the most humbling symptom that I have with my 0:08:26.240 --> 0:08:30.960 multiple sclerosis is the loss of bladder control. That is 0:08:31.840 --> 0:08:38.800 an incredibly embarrassing, sort of dejecting thing to experience because 0:08:39.960 --> 0:08:42.680 it makes you feel like you're incapable as an adult. 0:08:42.760 --> 0:08:46.160 You know, you've gone back to being a child and 0:08:46.280 --> 0:08:51.160 not being able to make it to the bathroom on time. Recently, 0:08:51.520 --> 0:08:56.679 my short term memory is evading me. I need sticky 0:08:56.720 --> 0:08:59.800 notes to get through my day. Otherwise I don't know 0:09:00.720 --> 0:09:03.320 where I am. Sometimes I'll be in the car, I'll 0:09:03.320 --> 0:09:07.079 be driving and I have completely forgotten where I'm going. 0:09:08.080 --> 0:09:10.800 But even after all of that, I'm still one of 0:09:10.840 --> 0:09:14.200 the lucky ones who have multiple sclerosis because at this point, 0:09:14.280 --> 0:09:18.480 I don't need any assisted devices to move around. I 0:09:18.520 --> 0:09:21.920 don't need a cane yet or a walker. I do know, though, 0:09:21.960 --> 0:09:25.680 that in the future I will most likely be confined 0:09:25.720 --> 0:09:30.600 to a wheelchair. I'm not thrilled about that, obviously, but 0:09:30.679 --> 0:09:34.400 I'm sort of resigned to it. My worry is that 0:09:34.720 --> 0:09:39.080 as my disease progresses, I'll become a burden on my 0:09:39.200 --> 0:09:41.360 loved ones that will have to take care of me 0:09:41.600 --> 0:09:46.400 because I won't be capable of doing that. And I'm 0:09:46.480 --> 0:09:50.560 scared as to how my final days will play out, 0:09:50.640 --> 0:09:55.520 because multiple sclerosis won't kill me, but the fact that 0:09:55.600 --> 0:09:58.480 I don't have an immune system will kill me. So 0:09:59.600 --> 0:10:03.000 I don't know if it'll be pneumonia or some sort 0:10:03.040 --> 0:10:07.200 of sepsis or at this point COVID. It's like a 0:10:07.280 --> 0:10:11.000 grab bag. And so that sort of fear of the 0:10:11.120 --> 0:10:16.560 unknown really just overwhelms you at times, and you just 0:10:17.160 --> 0:10:20.040 want to sit on the couch and say, well, what's 0:10:20.120 --> 0:10:24.320 the point. But at the end of the day, you 0:10:24.480 --> 0:10:26.680 just have to do your best and get up and 0:10:26.880 --> 0:10:27.280 try to. 0:10:27.280 --> 0:10:28.079 Keep going. 0:10:29.320 --> 0:10:35.920 And see the lucky side, the bright side that I 0:10:36.040 --> 0:10:39.320 still can walk on my two legs and I still 0:10:40.760 --> 0:10:45.280 can have a full life where I walk my dogs 0:10:45.400 --> 0:10:52.439 or drive a car. So as much as the dark 0:10:52.840 --> 0:10:55.600 thoughts want to take over, I have to try and 0:10:55.640 --> 0:11:00.640 really stop and remind myself that it's a day by day. 0:11:01.520 --> 0:11:03.400 You can't focus. 0:11:02.960 --> 0:11:05.960 On what could be coming. 0:11:06.840 --> 0:11:09.360 You have to just take every day as it is 0:11:09.640 --> 0:11:14.560 and be thankful that that's where you are at that moment. 0:11:15.600 --> 0:12:00.120 And that's my story. 0:12:04.320 --> 0:12:11.240 Wow, it's just there's just there's just so much. Yeah, 0:12:11.400 --> 0:12:14.640 thank you so much, so much, Nikki for taking the 0:12:14.679 --> 0:12:17.320 time and being willing to share your story with us. 0:12:17.760 --> 0:12:19.640 Yeah, thank you. We really appreciate it. 0:12:19.960 --> 0:12:23.040 Yeah, we do. Hi. 0:12:23.280 --> 0:12:26.640 I'm Erin Welsh and I'm Erin Alman Updike. 0:12:26.520 --> 0:12:29.040 And this is this podcast will kill. 0:12:28.840 --> 0:12:33.480 You Today we're talking about multiple sclerosis. 0:12:34.240 --> 0:12:42.280 We are This is a very complicated topic. It is. 0:12:42.520 --> 0:12:48.439 It's complicated in so many ways, and I want to 0:12:48.480 --> 0:12:51.280 say thank you again Nikki for sharing your story. I think, 0:12:51.720 --> 0:12:56.520 especially for a topic like MS, it's so important to 0:12:56.600 --> 0:12:58.800 be able to hear from people that are living with 0:12:58.840 --> 0:13:02.240 this disease, because, as I think we'll kind of see 0:13:02.240 --> 0:13:05.839 in the biology section, as much as you can learn 0:13:05.960 --> 0:13:09.640 about the specific biology of what underpins this, it just 0:13:09.840 --> 0:13:14.640 doesn't fully encompass the experience of someone who is living 0:13:14.679 --> 0:13:15.679 with this, you know. 0:13:16.120 --> 0:13:19.360 No exactly. That's something that I came across a few 0:13:19.400 --> 0:13:23.720 times too. And the history research is that like MS, 0:13:23.720 --> 0:13:26.880 like many other diseases, are described by a series of 0:13:26.960 --> 0:13:31.040 signs and symptoms, but those signs and symptoms vary from 0:13:31.040 --> 0:13:35.120 person to person, and they don't capture the feeling of 0:13:35.160 --> 0:13:38.960 someone like how does it feel to, you know, experience 0:13:39.080 --> 0:13:41.760 this symptom or this sign, And so it just I 0:13:41.800 --> 0:13:47.440 think that it really shows how inadequate. Are you know, 0:13:47.760 --> 0:13:53.000 diagnostic criteria are not even diagnostic criteria, but how inadequate 0:13:53.040 --> 0:13:55.559 our definitions of disease really are. 0:13:55.960 --> 0:13:58.880 Yeah, and our and our measures of things too, because 0:13:59.280 --> 0:14:02.720 you know, we can measure like life years lost or 0:14:02.840 --> 0:14:06.679 disability scales and things like that, but that doesn't encompass 0:14:06.800 --> 0:14:09.560 like so many other parts of your life. 0:14:10.080 --> 0:14:11.920 Yeah, no, absolutely so. 0:14:12.320 --> 0:14:14.680 Yeah, I think that's very true for a lot of 0:14:14.720 --> 0:14:18.000 the chronic diseases that we've covered on this podcast, like 0:14:18.040 --> 0:14:21.240 sickle cell I feel like that a lot. With cystic fibrosis, 0:14:21.320 --> 0:14:25.080 I felt like that a lot. So I very much 0:14:25.080 --> 0:14:29.680 appreciate you, Nikki, Thank you so much. Yeah. 0:14:29.120 --> 0:14:32.400 Well, is it quarantin any time? 0:14:32.560 --> 0:14:32.800 It is? 0:14:33.720 --> 0:14:35.680 After that, it's quarantin any time. 0:14:36.840 --> 0:14:38.240 What are we drinking this week? 0:14:38.720 --> 0:14:40.520 We're drinking Sylvia's Sour. 0:14:41.520 --> 0:14:46.400 This is named for Sylvia Lowry, who I'll talk a 0:14:46.400 --> 0:14:49.120 lot more about her later, but basically, she was an 0:14:49.160 --> 0:14:56.400 incredible person who essentially like founded the National Multiple Sclerosis 0:14:56.440 --> 0:15:00.520 Society and also helped found the Multiple scleros Is International Federation. 0:15:00.600 --> 0:15:03.360 It's just like she did such an incredible amount of 0:15:03.360 --> 0:15:07.400 work to raise awareness and research funds and support funds 0:15:07.400 --> 0:15:10.520 for people living with MS, so we wanted to honor 0:15:10.560 --> 0:15:13.320 her with a quarantine drink. 0:15:14.720 --> 0:15:16.480 So, Aaron, what is in Sylvia? 0:15:16.560 --> 0:15:24.080 Snour It is orange and mango and rum and limejuice 0:15:24.120 --> 0:15:29.560 and some mint and yeah, I don't remember fully, but 0:15:29.640 --> 0:15:33.760 I will post the full recipe on our website this 0:15:33.840 --> 0:15:36.720 podcast will Kill You dot com, along with the non 0:15:36.800 --> 0:15:40.640 alcoholic place eber Rita recipe, and I will also post 0:15:40.840 --> 0:15:46.240 both on our social media pages Twitter, Facebook, Instagram, et cetera. 0:15:46.400 --> 0:15:49.560 So check it out there on our website This podcast 0:15:49.560 --> 0:15:53.120 will Kill You dot com. 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I actually wrote it down 0:16:20.280 --> 0:16:22.800 on a post at this time, but I left it upstairs. 0:16:26.800 --> 0:16:28.320 Well, there you have it. 0:16:28.880 --> 0:16:31.160 Do we have any other business or should we get 0:16:31.200 --> 0:16:32.640 into the episode, I think. 0:16:32.440 --> 0:16:59.240 We should get into the episode right after a short break. 0:17:02.880 --> 0:17:12.840 Multiple sclerosis or MS is an autoimmune inflammatory, chronic demyelinating, 0:17:13.440 --> 0:17:17.000 neuro degenerative disease of the central nervous system. 0:17:17.400 --> 0:17:18.879 That's a lot of adjectives. 0:17:18.880 --> 0:17:22.360 There's a lot of words I know, and we'll get 0:17:22.359 --> 0:17:24.600 into all of them and what all of those things mean. 0:17:25.800 --> 0:17:30.840 But there are basically two major processes at play in 0:17:30.880 --> 0:17:38.280 the pathology of MS. Demyelination which occurs in an autoimmune fashion, 0:17:38.800 --> 0:17:43.680 so our own immune system attacking our nerves along with inflammation, 0:17:44.480 --> 0:17:48.720 and then scar formation or gliosis that then results in 0:17:48.800 --> 0:17:52.119 nerve damage. So those are kind of the two big 0:17:52.480 --> 0:17:53.920 picture things that are happening. 0:17:54.359 --> 0:17:54.760 Okay. 0:17:56.040 --> 0:17:59.880 MS has several different classifications, and will go through them 0:17:59.880 --> 0:18:04.280 all in a bit, but the relapsing remitting form of MS, 0:18:04.440 --> 0:18:08.639 which is often called RR or RMS, is the most common. 0:18:08.920 --> 0:18:11.800 I think most sources I found sent up to ninety 0:18:11.840 --> 0:18:15.919 percent of cases are the relapsing remitting form. And then 0:18:15.960 --> 0:18:19.960 there's the primary progressive form or PPMS, which is less 0:18:20.000 --> 0:18:24.119 common about ten percent, and then a secondary progressive that 0:18:24.280 --> 0:18:30.480 can result from the relapsing remitting form. So in terms 0:18:30.480 --> 0:18:34.320 of the pathology at its core. What's happening in MS 0:18:34.920 --> 0:18:39.679 is that our neurons become demyelinated. We've talked about myelin 0:18:39.760 --> 0:18:43.000 I think before on this podcast, but I can't remember 0:18:43.119 --> 0:18:45.359 what episode, and I tried to look through my notes 0:18:45.359 --> 0:18:50.640 and I couldn't find it. But anyways, myolin is the sheath. 0:18:50.920 --> 0:18:55.040 It's the outer layer of our nerve axons. It's like 0:18:55.160 --> 0:18:59.040 an insulating layer that surrounds our nerve fibers. You can 0:18:59.080 --> 0:19:02.240 think of it as like the insulation around an electrical wire. 0:19:02.480 --> 0:19:04.119 That's exactly how I was thinking about it. 0:19:04.240 --> 0:19:08.320 Yeah, that's how it's most often described. Oh yeah, so 0:19:08.640 --> 0:19:14.560 without this, you know, insulating sheath, nerve impulses can't travel. 0:19:14.760 --> 0:19:17.879 Either they can't travel as quickly as they're supposed to, 0:19:18.760 --> 0:19:21.399 or they can't travel the way that they're supposed to, 0:19:21.720 --> 0:19:24.440 or sometimes they can't travel at all. They just simply 0:19:24.480 --> 0:19:28.520 can't make the jumps they need to make. So as 0:19:28.640 --> 0:19:32.480 this process of demyelination, which literally just means like the 0:19:32.560 --> 0:19:37.480 myelin sheath is going away. As this myelin sheath becomes destroyed, 0:19:38.640 --> 0:19:43.640 nerve impulses aren't traveling from our brain to whatever target 0:19:43.800 --> 0:19:49.640 organ they're supposed to. And then this can lead to 0:19:50.080 --> 0:19:53.960 any and all different kinds of neurologic symptoms because of 0:19:54.000 --> 0:19:58.240 this lack of signal transduction. And so that's what the 0:19:58.359 --> 0:20:01.440 kind of symptoms can look. What does that actually mean 0:20:01.600 --> 0:20:03.679 in terms of disease, Let's talk about it. 0:20:03.760 --> 0:20:04.680 Anything and everything. 0:20:04.880 --> 0:20:08.840 Anything and everything is the real answer. So MS often 0:20:08.880 --> 0:20:13.080 starts with what is called a clinically isolated syndrome or 0:20:13.119 --> 0:20:17.000 a CIS. This is, and I think like eighty five 0:20:17.040 --> 0:20:21.119 percent of cases, the very first manifestation of MS, and 0:20:21.200 --> 0:20:25.679 it can be almost anything that's neurologic, and it just 0:20:25.760 --> 0:20:29.080 depends on where in the brain or the spinal cord 0:20:29.200 --> 0:20:32.720 this demyelination happens. So let me give you an example. 0:20:33.520 --> 0:20:37.600 One relatively common presentation that happens in about twenty percent 0:20:37.640 --> 0:20:40.800 of people as the first sign of MS is something 0:20:40.840 --> 0:20:45.719 called optic neuritis. This is when the demylination and this 0:20:45.880 --> 0:20:49.840 inflammation happens to affect the optic nerve, which is our 0:20:49.880 --> 0:20:55.040 second cranial nerve. Optic neuritis, when it's like this, presenting 0:20:55.080 --> 0:21:00.639 sign of MS usually happens as a pretty abrupt onset 0:21:00.760 --> 0:21:06.400 of blurry vision or loss of color vision, or complete 0:21:06.480 --> 0:21:10.960 loss of vision in one eye or sometimes the presence 0:21:11.000 --> 0:21:14.320 of like a black spot or a scotoma in the 0:21:14.359 --> 0:21:18.960 middle of your vision and pain with eye movement because 0:21:19.000 --> 0:21:20.960 of this inflammation that's happening in the nerve. 0:21:21.320 --> 0:21:25.920 Oh okay, why is this one of the first signs? 0:21:26.320 --> 0:21:30.560 Great question. It's just a common place that MS affects, 0:21:30.840 --> 0:21:34.280 is the optic nerve in your brain, and so it's 0:21:34.480 --> 0:21:39.040 a it's just a common place that you will then 0:21:39.280 --> 0:21:42.440 have MS presenting. And I know that's not a very 0:21:42.480 --> 0:21:43.479 satisfying answer. 0:21:44.200 --> 0:21:47.679 Well, there's not a lot of satisfying answers in I 0:21:47.720 --> 0:21:48.919 think this episode. 0:21:49.040 --> 0:21:55.320 Probably yep, yeah, But this optic neuritis doesn't occur exclusively 0:21:55.440 --> 0:21:58.240 in MS. It can occur in other disorders as well, 0:21:59.240 --> 0:22:03.040 but usually MS it happens just on one eye rather 0:22:03.119 --> 0:22:05.560 than both eyes, though in theory it could happen in 0:22:05.600 --> 0:22:07.879 both and in other disorders it might be more common 0:22:07.920 --> 0:22:11.240 to happen in both eyes at the same time, but 0:22:11.680 --> 0:22:15.440 that is sort of just one very small example. This 0:22:15.640 --> 0:22:19.640 type of demyelination and inflammation can happen in any part 0:22:19.760 --> 0:22:22.840 of the white matter, which is where the myelin containing 0:22:22.880 --> 0:22:26.760 nerves are in our brain or our spinal cord. So 0:22:26.840 --> 0:22:30.919 some other common presentations of this clinically isolated syndrome or 0:22:30.960 --> 0:22:35.040 this first time presentation of what will then be MS. 0:22:35.680 --> 0:22:39.160 Could be weakness in one or more of your limbs. 0:22:40.520 --> 0:22:45.040 It could be spasticity on the flip side, which is 0:22:45.119 --> 0:22:50.160 where you know the muscles become very either flexed or 0:22:50.600 --> 0:22:54.120 they get stuck in an extended position and that can 0:22:54.160 --> 0:23:01.080 be very painful. You can have abnormal sensation like numbness 0:23:01.240 --> 0:23:05.640 or tingling in the arms or legs, or even one 0:23:05.760 --> 0:23:09.080 that kind of comes up commonly is like a band 0:23:09.320 --> 0:23:13.520 like sensation of like a squeezing band feeling around the 0:23:13.600 --> 0:23:14.200 rib cage. 0:23:14.720 --> 0:23:14.960 Hmm. 0:23:17.040 --> 0:23:21.320 If the autonomic system, the autonomic system parts of your 0:23:21.320 --> 0:23:24.280 brain are what's affected, you can have bladder or bowel 0:23:24.359 --> 0:23:29.159 incontinence or loss of function. If it's the cerebellum or 0:23:29.200 --> 0:23:32.239 parts of the brain stem that are involved, then you 0:23:32.280 --> 0:23:35.199 can have difficulties walking like we've talked about on this 0:23:35.280 --> 0:23:38.800 podcast before, a taxia where you just can't coordinate your 0:23:38.840 --> 0:23:43.800 movement so you have gait difficulties. So the list of 0:23:43.920 --> 0:23:46.480 possible symptoms is very, very very. 0:23:46.320 --> 0:23:51.240 Long, and it just depends on like where the demyelination 0:23:51.440 --> 0:23:55.760 and inflammation is happening exactly right, So I have a 0:23:55.840 --> 0:23:57.600 question about the demyelination. 0:23:57.960 --> 0:23:58.439 What is that? 0:23:59.520 --> 0:24:04.440 Like how fast of a process is that? And I mean, 0:24:04.480 --> 0:24:07.919 and maybe this is like way looking ahead to the future, 0:24:07.960 --> 0:24:12.600 but it is like when does myolination in general happen? 0:24:13.000 --> 0:24:16.040 And is there any possibility for like remielination. 0:24:16.560 --> 0:24:20.439 Yeah, yes, we'll talk all about that, okay, Yes, So 0:24:20.680 --> 0:24:24.800 in general, to be classified as like a clinically isolated syndrome, 0:24:24.920 --> 0:24:29.000 these symptoms come on anywhere from over a matter of 0:24:29.119 --> 0:24:32.879 hours to a few days, so they happen kind of gradually. 0:24:32.920 --> 0:24:35.639 So this demilination is like it's a process. It's not 0:24:35.720 --> 0:24:38.520 just like and all of a sudden the myolin's gone. 0:24:38.760 --> 0:24:42.639 Okay, it's like an unraveling, all right, Yeah, but it 0:24:42.680 --> 0:24:46.200 does happen relatively quickly, so they come on, you know, within. 0:24:46.240 --> 0:24:50.720 Hours to a few days. To be classified as a 0:24:50.760 --> 0:24:53.960 clinically isolated syndrome, the symptoms have to last for at 0:24:54.040 --> 0:24:57.159 least twenty four hours. So we're not talking about like 0:24:57.320 --> 0:25:00.000 numbness that comes on and lasts just a few hours 0:25:00.280 --> 0:25:04.760 and then disappears. This is something that comes on lasts 0:25:04.800 --> 0:25:08.600 at least a day, but usually from days or weeks 0:25:09.119 --> 0:25:14.119 and then does resolve. And generally, especially with a clinically 0:25:14.160 --> 0:25:18.200 isolated syndrome or a first time presentation, people do tend 0:25:18.200 --> 0:25:21.680 to recover to about eighty to one hundred percent capacity. 0:25:22.119 --> 0:25:25.399 So in the case of something like optic neuritis, you 0:25:25.560 --> 0:25:28.520 have loss of vision or drastic change in your vision, 0:25:28.960 --> 0:25:31.280 it lasts for at least twenty four hours, and then 0:25:31.320 --> 0:25:35.240 it gradually improves back to pretty close to or at 0:25:35.400 --> 0:25:39.840 your baseline level of vision. And that happens with essentially 0:25:39.880 --> 0:25:42.520 remyelination of oh of your nerves. 0:25:43.280 --> 0:25:44.520 And then how does that happen? 0:25:44.880 --> 0:25:49.720 Oh, Aaron will Well, we'll have to get into all of. 0:25:49.680 --> 0:25:52.359 It, Okay, Okay, I'm sorry, You're. 0:25:52.280 --> 0:25:59.159 Okay, it's good questions, it's just too much, okay. But 0:25:59.240 --> 0:26:03.960 so that's the symptoms, right, One of the key things 0:26:04.280 --> 0:26:08.399 because obviously all of those symptoms are incredibly broad and 0:26:08.440 --> 0:26:13.199 it's not just MS that can cause any of those symptoms, right, 0:26:13.720 --> 0:26:17.800 They're not specific in and of themselves to MS necessarily. 0:26:18.960 --> 0:26:21.560 So one of the key things to discern, especially with 0:26:21.640 --> 0:26:27.479 a first time presentation of an isolated neurologic symptom, is 0:26:27.520 --> 0:26:32.440 whether or not there are associated MRI changes. So MRI 0:26:32.800 --> 0:26:36.200 magnetic resonance imaging is a type of imaging that's really 0:26:36.240 --> 0:26:39.240 good at looking at soft tissues and our nervous system. 0:26:39.760 --> 0:26:43.080 And there are a number of different MRI changes that 0:26:43.160 --> 0:26:47.400 you can see on different types of MRI imaging, which 0:26:47.480 --> 0:26:50.680 I'm not a radiologist, so I'm not about to get into, 0:26:52.760 --> 0:26:57.240 but there are a number of different findings on MRI 0:26:58.600 --> 0:27:04.240 that can be relatively specific two MS. Right, So if 0:27:04.280 --> 0:27:08.880 you have these symptoms consistent with a cis a clinically 0:27:08.920 --> 0:27:13.200 isolated syndrome, and you have these typical findings on MRI, 0:27:14.320 --> 0:27:18.840 you are very likely to then go on to develop MS. Okay, 0:27:19.320 --> 0:27:22.680 and with new diagnostic criteria, if you find more than 0:27:22.720 --> 0:27:26.159 one of these MRI findings that are separate in time 0:27:26.359 --> 0:27:31.320 and space. So either like two symptoms with two different 0:27:31.440 --> 0:27:37.200