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Linda Elsegood: I'd like to introduce Trish from Australia. She has primary progressive MS. Welcome, Trish.
Trish: Hi there.
Linda Elsegood: And I understand that you're originally from South Africa.
Trish: That's correct.
Linda Elsegood: So you're a foreigner?
Trish: Yes. We find everyone in Australia is pretty foreign. Just about everyone. Yeah, that's true.
Linda Elsegood: So when did you first start to notice MS symptoms?
Trish: Well, my very first, I didn't know then of course, but looking back, which we all did when I was ten years old, I was very fit. I was a gymnast. I was a netball player. Um, and I did something else, um, and was never fatigued.
And then I went on a hike with some friends up a mountain, and I just couldn't keep up. Um, and that was my first experience at 10 and then at 15 I had a really bad, um, what that call today attack in, and I only recognized it as such because many years later, maybe 20 or 30 years later, I had exactly the same experience.
Good grief. This is, they never diagnosed it then they didn't know what it was. And then I had, it became really bad at about 45.
Linda Elsegood: Okay. When you say became really bad, what were your symptoms?
Trish: Um, well, actually It always seems to be, and I was walking around being on a long walk, and I was walking back and my legs, I was struggling, and my legs started leaning to the side, and I only knew what it was because I was actually working with people with MS at that time.
So I diagnosed myself. And then I remember when I got to the house of walking up a hill, no, my leg was trembling and I felt really weak and I had trouble. And then I spent the next year going round trying to get people to give me a diagnosis cause walking was getting difficult and nobody could diagnose it until I finally went back to the GP and I said, look. I think this is MS. Then she sent me to a neurologist who said. It's not. Anyway, all I wanted to be an MRI. Finally, he gave me an MRI, which of course many said, yes, you've got MS and I can't do anything but buy. And as I walked up the door, he said, Oh, and you want to have your next attack in a month.
So I engaged him, and I did. That took me a year before I stopped getting worse. Every month. It makes like their point, the bone that you are sourced from, isn't it?
Linda Elsegood: So by this time, had you got any other symptoms other than the leg?
Trish: Actually remember. But the worst thing was always, Oh yes. The other thing that I've always had; it's sort of one of my primary symptoms has been a pain.
So I started to ache. And the way I could best describe it is, um, like, um, rheumatism that's sort of ache, aches in the arms and legs and the shoulders.
Linda Elsegood: Okay. So moving on, how did you hear about LDN?
Trish: Ah. That's, I wish I'd heard about it more recently, but I've found that thread, and I think it was on probably, this was their MS, which I think is a, an English website.
And they have a thread on LDN. And that was early, about four years ago. And by that stage, I was tremendously allergic, which has been one of my problems. And so I don't easily take anything without having allergy or allergic reactions. But when I saw that it was a very low dose, I thought, you know, I think I can try that. And so it took me a year before I thought, I'm going to, I'm going to go for that. So now wished I'd known about it ten years earlier.
Linda Elsegood: Was it easy to get a prescription in Australia?
Trish: Well, I was actually very lucky. I just walked into the medical centre, which is, you know, you could just go and see a whole number of doctors. They usually have four or five on duty, and I only very seldom go to the doctor, but I walked in there, and I just happened to get a very nice young Asian doctor. And the tertiary was horrified because when she looked it up, you know, they only had that big dose of 50 milligrams for drug addiction and alcohol, and I said, all I want is three milligrams. I mean, she said, well, really? What harm can it do?
Linda Elsegood: That's wonderful.
Trish: When I suggested for other people, they've had enormous problems.
Linda Elsegood: You were very, very lucky. So when you started, did you notice any side effects?
Trish: Yes, but then as I say that, I'm hugely allergic to everything. Yes, I did have side effects. I had insomnia for about eight months and I had a hot tan, and I got that very, very bad spasticity because spasticity is one of my bad symptoms. In fact, I have a Baclofen pump, which helps with the specificity of Baclofen with the pain. It's hugely. Um, so those were all things that I was determined that this was good.
And I'd started to see, I was lucky in that after two weeks, I started to see benefits. More benefit, even though I had all these, these side effects. Hold on. I said I can see benefits and I know it'll stop the progression and this is just, I've got to do this.
Linda Elsegood: Yes. What benefits did you notice?
Trish: Benefits. They were acute. Well, the first thing I noticed, which was just. That was after two weeks in the middle of the night. My, I've got one leg that was very stiff, and in fact, I couldn't bend it at all, but in the middle of the night, that leg got bent and I could actually bend it. It's got supple, like a good, sort of turn on my side and curl up a bit. That was the first thing, and then I saw gradually a huge number of things I think I've had about fifteen benefits, but I can remember the really big ones. Um, I always had really bad sinus, which would always lead to, and the worst thing of MS, but generally a new symptom. Um, but that stopped completely. I feel really, really good.
I'm never sick. I'm always well, and I'm always happy, which is lovely. I had been losing my voice for the full for two years and after I'd taken LDN probably for a year, I noticed my voice was coming back and it's now virtually a hundred per cent, and the other thing was I'd lost nearly all my sense of taste and smell. And that came back gradually. Haven't reached a hundred per cent, but at least I can have. My taste is about 80% at most. The smell is about 70%.
Linda Elsegood: Um, what else?
Trish: Let me see right now, I can walk, walk a bit further. I'll walk with a cane.
Trish: Hmm. But my walking is a bit better. My balance is better because I can actually stand in front of the wardrobe when I want to decide what to wear without falling in, which is actually a big thing. Um, what else can I do? I'm looking, reading my notes.
Trish: Oh, my bladder even improved a bit, which is always a big thing. All of it. Yeah. Um. And just doing things. I tell you the other thing that's actually made a big difference for me is my dexterity in my left hand is much better. I can actually type again, which I couldn't do for years.And there's a little bit, well. Something happening, um, among the machine. And, um, if somebody, these messages Weitzman it, she doesn't like it, I can unplug it now I can find that company.
Linda Elsegood: Um, okay. I forgot what I was asking now.
Trish: Just listing some of the benefits.
Linda Elsegood: Can you remember where you got it too? You said about the dexterity in your left hand.
Trish: Yeah, those, those are the main ones. The biggest ones that I can remember.
I mean, lots of little things like uncontrollable straights. For the dog, which I hadn't been able to do, or just little things like that. Lots of little things like that. And I just find that every night, every few months I noticed something new that's got better. Oh yes. And of course, no progression whatsoever.
No more. Not a single new symptom.
Linda Elsegood: Well, somebody who's primary progressive, that's a big deal, isn't it?
Trish: Yeah, well, because I just gradually kept getting worse. That's all. You know, every couple of months would be something new and you think, Oh no, what's this? Yeah.
Linda Elsegood: If you were to write your life for full LT analyst, the scale of one to 10 10 being the best, what would it have been?
Trish: Ah, before LDN um, I had a pump. Which I got about the year before. And of course, if I'd had LDN maybe I wouldn't have needed that, but I can't say, and that really made a huge difference because I had such terrible panic. I just didn't even want to live. Um, so I mean, I was really happy to be in a plane, for least have no pain and have my leg full flexible. Hmm. So I was definitely at about a five or six by then, but then I got out here, and then I reckon I'm right up. It's eight, maybe.
Linda Elsegood: What's good and how old are you now, Trish?
Trish: I am 63. I think the biggest thing about the LDN is, instead of living in fear of the future, feeling really, really scared. Just thinking, how bad am I going to get? What's going to come next? I can just start there and think, well, if anything, I'm getting better, and I can live my life more positively. And that's, I think it is a huge thing.
Linda Elsegood: It is. What would you say to other people who are contemplating a trial?
Trish: I’d say for goodness sake. Definitely try it, but most important of all, don't give up because I've recommended it to people. They're really excited. They go to the doctor, and the doctor is so negative, I won't give it to them, and they just give up or that if they managed to persevere and actually get it, then one is it doesn't work fantastically for them straight away.
Linda Elsegood: And they give up
Trish: And I say, you must give it a fair chance. I mean, I, fortunately, I did have some positive results, but I just persisted through all the negatives. And I did use, which you know about in England, but I know many Americans don't. I found a kinesiologist has been invaluable for me because she has been able to help me with all the allergies including my reactions to LDN, I would say, well, this is a problem, and I might have to stop for a while. Um, at one stage I was only taking three milligrams once a week. I now take what you, what seems to work for me best of all is three milligrams every second night. Okay. And that works
Linda Elsegood: Well. That's good.
Trish: Well. Yeah, I really do think people have to manage their own illness and they just, and especially I'm afraid the neurologist can't, or ones keep up with everything.
Oh, on table two and you've got to do your own research and then go and get it.
Linda Elsegood: Well, thank you very much for sharing your story with us today Trisha
Trish: Do appreciate it, help someone, especially those newly diagnosed. I think if only they take LDN,
Linda Elsegood: Any questions or comments you may have, please Contact Us. I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.