1 00:00:00,000 --> 00:00:09,120 Hello and welcome once again to Mike's MS Journey podcast. I'd love to welcome you 2 00:00:09,120 --> 00:00:18,640 all, new and old listeners. It's a real privilege to be sitting talking to you all again. Today's 3 00:00:18,640 --> 00:00:27,200 episode is going to be quite a bit different from what I've been doing recently. At the 4 00:00:27,200 --> 00:00:38,200 start I would sit here and just talk into my phone and just get my thoughts out. That 5 00:00:38,200 --> 00:00:46,600 is what I'm going to do again today. I did go to scripting a lot of my episodes, it just 6 00:00:46,600 --> 00:00:56,240 made things easier for me. With this episode there's some different bits and pieces that 7 00:00:56,240 --> 00:01:01,960 I want to get off my head. I'm going to be honest with you, I need to get out of my brain 8 00:01:01,960 --> 00:01:07,240 and into the world. None of it is necessarily what I would class as negative, I'm going 9 00:01:07,240 --> 00:01:18,200 to be honest. It's just thoughts that sometimes cross the mind that you need to put out there. 10 00:01:18,200 --> 00:01:24,880 And a lot of the thoughts that I've got currently, no surprise, are regarding treatment. As I 11 00:01:24,880 --> 00:01:31,320 say, as long as my chest x-ray which I've had and a blood test that I've had come back 12 00:01:31,320 --> 00:01:39,680 clear, then I should hopefully be looking to start my treatment of the ocrevas. That 13 00:01:39,680 --> 00:01:48,200 should be on Friday, this coming Friday that that starts. Now I've got to be honest, I've 14 00:01:48,200 --> 00:01:55,240 not done any Dr Google or anything like that in terms of trying to look up the range of 15 00:01:55,240 --> 00:02:01,960 things that can go on with that treatment. Don't get me wrong, my miss Niasse, she's 16 00:02:01,960 --> 00:02:09,040 been brilliant. She explained it both to myself and to my dad who thankfully came with me 17 00:02:09,040 --> 00:02:18,600 to that appointment. So we are aware of the sort of things that can go on. And I've got 18 00:02:18,600 --> 00:02:24,400 to be honest, the closer I'm getting to the treatment, yeah I'm actually getting a little 19 00:02:24,400 --> 00:02:31,400 bit scared. Yeah, no that's an understatement if I'm totally honest, it's more than a little 20 00:02:31,400 --> 00:02:39,320 bit scared. I'm pooping myself, that's the best I can put it is. I'm pooping myself over 21 00:02:39,320 --> 00:02:49,200 it. But at the same time, I know it might sound a bit strange, I'm actually quite excited 22 00:02:49,200 --> 00:02:54,840 about it as well. Because yeah, I mean I've deteriorated a lot over the last few months. 23 00:02:54,840 --> 00:02:58,120 And if there's just a small percentage chance that actually this treatment is going to help 24 00:02:58,120 --> 00:03:05,800 me not deteriorate as quick as I have and give me a bit of time as I currently am, I'll 25 00:03:05,800 --> 00:03:13,720 take that. Quite gratefully take that. So yeah, as I say I do totally understand there's 26 00:03:13,720 --> 00:03:22,840 a lot of bad things and I don't really want to go into that too much. Because I don't 27 00:03:22,840 --> 00:03:31,560 want to frighten anyone else. Because at the end of the day, let's be totally honest, they 28 00:03:31,560 --> 00:03:37,960 have to tell you what could potentially go wrong. It would be wrong if they didn't tell 29 00:03:37,960 --> 00:03:48,200 you that. But let's be totally fair, there is many, many thousands of people out there 30 00:03:48,200 --> 00:03:57,120 on Okravas that are perfectly fine. That actually they are seeing huge benefits to themselves. 31 00:03:57,120 --> 00:04:07,840 So as much as I care in my head, I do worry about stuff sometimes. And this is one of 32 00:04:07,840 --> 00:04:13,720 those times. But at the same time actually I really am looking at the positives. And 33 00:04:13,720 --> 00:04:28,200 for me one of the biggest positives is having a bit of time not having to deal with deterioration. 34 00:04:28,200 --> 00:04:34,320 Now going into deterioration, it was only the other day actually, I was at home and 35 00:04:34,320 --> 00:04:42,680 I started walking. Now I've had quite a nasty foot drop on the right foot for quite a long 36 00:04:42,680 --> 00:04:52,600 time now, many, many months. I got it on the left as well. And yeah, I'll be honest with 37 00:04:52,600 --> 00:05:00,720 you, it took me completely by surprise. It just, I've got to say it, it came out of nowhere. 38 00:05:00,720 --> 00:05:07,280 It was so strange. I sort of went to walk and my right foot naturally was doing what 39 00:05:07,280 --> 00:05:13,640 it always does. My left foot didn't want to move and my toes just wanted to scrape across 40 00:05:13,640 --> 00:05:22,680 the floor. Yeah, I was a bit put out by it. I was a little bit, woah, what's going on? 41 00:05:22,680 --> 00:05:30,280 Because don't get me wrong, I have occasionally got it on the left. But that's more so when 42 00:05:30,280 --> 00:05:36,600 I've over-exerted myself. I've been doing stuff that realistically I probably shouldn't 43 00:05:36,600 --> 00:05:43,640 be doing. Yeah, this I'd just been sat down. It didn't make a lot of sense and I have to 44 00:05:43,640 --> 00:05:51,440 be honest, it went on all of that evening. I woke up the following morning, it wasn't 45 00:05:51,440 --> 00:05:57,160 quite as bad, I'll be honest with you, it wasn't quite as bad, which was, I'll be honest 46 00:05:57,160 --> 00:06:02,640 with you, it put a bit of a smile on my face if that's the right way to put it. It sort 47 00:06:02,640 --> 00:06:14,480 of made me think, okay, yeah, this can get worse. It's going to get worse. I need help. 48 00:06:14,480 --> 00:06:21,600 I really do need that help. So yeah, all the fears, all of that sort of stuff is set to 49 00:06:21,600 --> 00:06:34,160 one side to an extent because actually I've got to look at the potential positives and 50 00:06:34,160 --> 00:06:43,680 there really is a significant amount of potential positives. And again, do I find it a little 51 00:06:43,680 --> 00:06:54,120 bit scary being sat in the hospital effectively on a drip? Yeah. I've only ever had that once 52 00:06:54,120 --> 00:06:58,480 in my life. That was the Christmas before, so we didn't know anything about MS at this 53 00:06:58,480 --> 00:07:06,000 point. And I was at work and I had real nasty pains on the left-hand side of my sort of 54 00:07:06,000 --> 00:07:13,800 chest and sort of, I'm going to say abdomen area, and it was horrific, the pains. And 55 00:07:13,800 --> 00:07:19,040 I got taken to hospital. My dad picked me up, he took me to hospital and they kept me 56 00:07:19,040 --> 00:07:24,000 in for quite a few hours actually that evening. And it's the first time actually in my life 57 00:07:24,000 --> 00:07:30,720 I'd ever had a drip. And they wondered if it might be something like gallstones. So 58 00:07:30,720 --> 00:07:37,240 a few weeks after I had to go for an ultrasound scan and yeah, again, that came back clear. 59 00:07:37,240 --> 00:07:44,160 A bit of a fatty liver, they said, but other than that, yeah, okay, not so bad. But yeah, 60 00:07:44,160 --> 00:07:49,600 it was actually not long after that. It was the following February. That was just before 61 00:07:49,600 --> 00:07:55,280 the Christmas. So it would have been the following February. You're going to be all looking what, 62 00:07:55,280 --> 00:07:59,480 a month and a half, two months after that the doctor sat me down and said to me that 63 00:07:59,480 --> 00:08:06,120 I should expect the diagnosis of MS. So yeah, I mean, that's the only time I've ever really 64 00:08:06,120 --> 00:08:15,160 had that, being in a hospital on a drip. And yeah, again, from my point of view, because 65 00:08:15,160 --> 00:08:24,800 this is also new, you know, maybe I am sort of over-egging it a little bit in my own brain, 66 00:08:24,800 --> 00:08:31,680 which is something that's very possible. It is really possible that I'm sort of worrying 67 00:08:31,680 --> 00:08:41,200 for no reason. But in my own opinion, if I wasn't worrying, I'd actually be a little 68 00:08:41,200 --> 00:08:48,720 bit more concerned. If I wasn't worrying, I would be thinking to myself, have I actually 69 00:08:48,720 --> 00:08:54,520 taken in all the information I've been given? Have I actually thought about that information? 70 00:08:54,520 --> 00:09:04,000 Because there's been a lot to take on. An awful lot. And I'm quite appreciative to the 71 00:09:04,000 --> 00:09:12,240 fact that there's been a lot of honesty attached to it all. Yeah, I mean, that's probably about 72 00:09:12,240 --> 00:09:18,120 as far as I want to go into that currently. Hopefully when I next talk to you, I can explain 73 00:09:18,120 --> 00:09:26,520 to you how the infusion has gone, because I will wait to record my next episode on either 74 00:09:26,520 --> 00:09:31,440 Saturday or Sunday of next week, because that will be after the infusion, as long as the 75 00:09:31,440 --> 00:09:38,520 blunt and the chest x-ray come back clear. Let's hope. So yeah, hopefully on the next 76 00:09:38,520 --> 00:09:44,360 episode I can go, yeah, I was being really, really silly, it went absolutely fine. So 77 00:09:44,360 --> 00:09:51,360 we'll see on that one. In terms of how I'm actually doing, as I've explained the other 78 00:09:51,360 --> 00:09:57,920 night, I had that foot drop come on the left hand side and since then, it's been coming 79 00:09:57,920 --> 00:10:07,120 and going. Yes, it's been on and off. More off than on thankfully, but it's getting me 80 00:10:07,120 --> 00:10:16,160 a little bit concerned. So all I can do is just sort of take it as it comes and hope 81 00:10:16,160 --> 00:10:22,640 for the best. Again, I've been getting lots of sort of stabby electric shocky type pains 82 00:10:22,640 --> 00:10:27,320 just about everywhere that you can imagine, I'm going to be honest. I actually had one 83 00:10:27,320 --> 00:10:37,320 of the dogs sat in the office at work and I'm tapping out an email and I got this electric 84 00:10:37,320 --> 00:10:44,960 shock pain just above my left knee, funnily enough. Actually, I yelped, I genuinely yelped, 85 00:10:44,960 --> 00:10:50,960 it really did hurt. And yeah, I mean, on and off, I've been getting that sort of stuff 86 00:10:50,960 --> 00:11:00,480 just about all over my body. I've noticed the last, probably the last 12 hours or so, 87 00:11:00,480 --> 00:11:05,400 I've actually been getting very tingly in my left hand as well. I don't know why. The 88 00:11:05,400 --> 00:11:10,560 rest of the arm is perfectly fine, not a problem, but my left hand's been getting very tingly, 89 00:11:10,560 --> 00:11:15,280 very itchy. And yeah, it's just been feeling a bit strange. And again, that's been on and 90 00:11:15,280 --> 00:11:23,800 off. It's not been a constant thing. It's been on and off. But yeah, it's not been particularly 91 00:11:23,800 --> 00:11:31,600 nice. My memory, it's not been great. I'll be honest, my memory's not been great at all. 92 00:11:31,600 --> 00:11:37,040 I've been having conversations with people and literally within a couple of minutes, 93 00:11:37,040 --> 00:11:43,200 I totally forget what we've been talking about. Very, very strange. I mean, I can sit texting 94 00:11:43,200 --> 00:11:50,960 on my phone and put phone down and somebody could say to me, what was that conversation? 95 00:11:50,960 --> 00:11:54,400 Without reading the text messages, you've got no chance of me telling you. And it's 96 00:11:54,400 --> 00:11:59,480 not been all the time. It's just been now and then. But again, it's something I find 97 00:11:59,480 --> 00:12:04,320 very disconcerting. I'm not a fan of it. Nobody's going to be. Believe me, I can understand 98 00:12:04,320 --> 00:12:11,280 that. But yeah, I don't like it. It's something that is worrying me. I'll be honest, there's 99 00:12:11,280 --> 00:12:18,360 quite a lot of things at the moment that are worrying me in terms of this. But I'm trying 100 00:12:18,360 --> 00:12:24,160 to push through. I'm trying to fight through. As I say, for me personally, the thought of 101 00:12:24,160 --> 00:12:35,040 getting the help from the treatment is massive. It's something that honestly, we fought really, 102 00:12:35,040 --> 00:12:43,480 really hard as a family to make this treatment happen. Now, I've had the letter from EMS 103 00:12:43,480 --> 00:12:47,960 nurse that explains to me what the MDT have said. I'm not going to go into massive detail, 104 00:12:47,960 --> 00:12:56,400 but yeah, the doctor that was on the MDT, he wanted to put it down as primary progressive. 105 00:12:56,400 --> 00:13:03,160 But if he did that, I was not going to be granted treatment because at the stage I would 106 00:13:03,160 --> 00:13:13,440 have been at apparently, it wouldn't have sat on their tick box sheets where I could 107 00:13:13,440 --> 00:13:21,400 have been granted the treatment. So all of the rest of the MDT went for relapse in remitting 108 00:13:21,400 --> 00:13:28,680 because that meant I can have treatment. Because as the letter says, they believe I should 109 00:13:28,680 --> 00:13:36,520 be given the opportunity to have treatment and see how it goes. So thankfully, that's 110 00:13:36,520 --> 00:13:42,680 where they went. That means that yes, the treatment is there. It's on offer. As long 111 00:13:42,680 --> 00:13:47,360 as like I say, I'm going to say it again, I've got my fingers crossed that the chest 112 00:13:47,360 --> 00:13:52,280 x-ray and the blood tests come back clear and we can get started. I can get some help 113 00:13:52,280 --> 00:13:58,020 with a fight I've been having because as I've said before, my family have been incredible 114 00:13:58,020 --> 00:14:06,720 in this fight. They really, really have. Every single one of them. All of the kids, fantastic. 115 00:14:06,720 --> 00:14:15,400 My dad, absolutely incredible. My brother, top notch. Lisa, I don't need to say anything 116 00:14:15,400 --> 00:14:24,440 more. She's just unreal. You know, I've had my mum and her husband as well as my younger 117 00:14:24,440 --> 00:14:28,720 brother. I'm not going to call him my little brother because he's taller than I am. You 118 00:14:28,720 --> 00:14:36,320 know, all of them have been available should I need. Nan, Grandad, the list could go on. 119 00:14:36,320 --> 00:14:42,880 Genuinely, the list could go on. They've all been incredible. But now it's time for 120 00:14:42,880 --> 00:14:51,000 the medical help that I'm needing. And yeah, my fingers are crossed. And like I say, I'll 121 00:14:51,000 --> 00:15:00,440 say it again. Yes, I'm scared. Yes, I'm nervous. But weirdly excited as well. Well, that's 122 00:15:00,440 --> 00:15:04,560 where we'll leave it for today. Thank you very much for listening and I look forward 123 00:15:04,560 --> 00:15:21,600 to speaking to you all again soon. Bye bye.