LDN Social Media
Get connected with us on social networks
Linda Elsegood: Today. We're joined by Diana from United Kingdom who takes LDN for primary progressive ms. Thanks for joining me, Diana.
Diana: Okay.
Linda Elsegood: Could you tell us when you first noticed that there was something wrong with you?
Diana: Yes, it was January 2010. I had gone to pick my daughter up from, uh, from the airport. My husband had driven, I was in the passenger seat, and I went to get out, and my left leg wouldn't move properly.
And I thought. It's a crime or something where it started dragging. Um, and it sort of didn't really recover much. Um, so I'll store a doctor who said, I need to see a physio. And I saw the physio who said, this is not for me. It's neurological, which was good that he sort of spotted that. So it was about. February 2010, when I saw a neurologist whose aim said, right, we're going to give you some, an MMR MRI, which they did from my waist down. And I come back, and they said they couldn't see anything. I was still having problems.
So, um, then I went and saw another. A neurologist who's at the same hospital who said, right, we're going to give you another MRI, which they did from the neck down.
And nothing really showed set for the usual wear and tore on the back. And then they said, no, you need another MRI, which was on the brain. And that's when they said, Oh, you've got lesions on your brain. And I've got the letters telling me I had the million station, which I'd not heard of myelination yet.
Thank you. And, um, obviously they said, Oh, well, that's ms. Multiple sclerosis. And I was like. It's really weird. Cause I didn't know about it, but you talk to everybody else. And I do as soon as they say ms. Um, so then they, um, said to Cruz it, we need to give you a, a lumber punch. So this is by now June 2010.
So I had around with punch, and they said, yes, it's definitely ms. And then they asked me about the history previous to, to, you know, um, my diagnosis. And it turned out that I possibly had it for years because back in 1982. I was having problems where I was like, told me I had temporal lobe, epilepsy.
I never had a fit, but I used to, um, Get these really weird sensations where I couldn't speak properly, and my stomach would blow. And I couldn't cope. I had two children by then, and I was under the London hospital, neurology hospital up in Holborn, and they told me I temporal lobe epilepsy and put me on phenytoin.
And then I had to come up with that. Cause I fell pregnant with my daughter in 1984 and went on to take her child, which I stayed on for quite a few years. Cause I still was insisting. That's probably what it was. And then I went back in about a couple of years after my daughter was born and saw another person up there who said, Oh no, you've got stomach migraine.
Come straight off the Tegreto. So I did. And between 86 I had a few episodes of, um, this, this sensation where, uh, I couldn't cope my, uh, Functioning my eyes go funny. My words were slow and everything. And because I just thought of, they've told me what it is.
I'm not going back down that route. I just put up with it, but it was every so many months. It wasn't all the time until 2010. Obviously when this thing with my leg happened, and I was getting the weird sensations where it felt like I was having. Bits of Woodward attaching themselves to me. And I was having running water was all running down my leg and my, my feet as they still are now totally numb.
And he just carried on from there. Really. And so they, first of all, they said, I had relapsing-remitting, ms. They put me on Gabapentin and, um, But every time I went back, that's what they told me the first time it was relapsing-remitting. And then when I went back and thought and urologist, I think it was about three months later, they said, no, you're not relapsing-remitting.
Cause it hadn't gone away. Your primary progressive. And then I decided, they said that I should take this Rebif, you know, where you inject yourself, which I. So, well, if it's going to help, I will try anything. I don't like this. This is awful. Or, cause I couldn't was beginning to not function. I put grandchildren.
And so I did the Rebif. I did it for two weeks. It was terrible. I was so ill on it. Plus the fact I bruised everywhere, but I just had, they said you might get flu-like symptoms. And that's what I constantly had. The whole two weeks, I was really ill. I said I'm not doing that. And then I said, well, you don't.
And then when I went back again, she said, we shouldn't have been put on it because you've got primary progressive ms. And it's not going to help anyway. So she shrugged us older by then. I'd met up with some other MSP people. And one of them said to me, Have you heard of LDN? I said, Nope. What is it? She said I take it.
I found it very beneficial. I, once again, I went to my doctor who said, no, you can't have it because it's not licensed here. So I said, well, I'm going to have it. She gets it. So I pay for it from Dixon's. Is it Dickenson's the chemist in Scotland? Yeah. And, um, From that day. Uh, I can't, uh, I still have my moment, obviously.
I'm still constantly got this, uh, with my legs, numb and date, and I can't walk very far, but it's allowed me to keep working, and I do work three days a week. I teach adults. Um, with, uh, Mental illness and that it, but I can get up and I can do my job three days a week. And, uh, being able to look after my grandchildren, the only thing I will say I did, um, uh, I started, um, I started off at 1.5, and I was on three milligrams.
I was finding that I was having really bad episodes. Um, if I was taking it every day, I don't know if this makes sense to anybody. So I, I cut it down, that what I do now, I take, and also I better, if I take it in the morning, I've been doing little tests on myself, and I found that what has worked for me now, I take one every other day at seven o'clock in the morning, three milligrams.
And that has worked for me. Better than if I was taking it every day. Um, but, and, uh, I, I don't take anything else now because I've also gone. I don't know if this is simply through this, but I've also gone down the homoeopathic home route. So I only take Gabapentin and LDN now. And, um, Touchwood feeling a lot better than I have done for ages.
Um, in myself, my ms. I still struggle. I couldn't say I could. I still do. I use the stick. Um, and I couldn't walk from one into my high street to the other. I haven't, I can only do one shop at a time, but mentally and more focused on. I do feel this is the inner ODM. And I'll tell you why as well because I did come off its two weeks because I wasn't, well, I had a virus and all, so I wasn't functioning very well.
I come off of it, and I felt the fatigue was terrible. And the, so I do feel as soon as I went back on it, the fatigue is a lot better, a lot better.
Linda Elsegood: Well, that's a good result.
Diana: It is a good result. And, um, And the other friend that takes it to sort of at my stage a little bit further on with RMS, actually, she's a bit older than me.
And she said it's a longer, she, she also swears by it. And, uh, she wouldn't, she only takes that and has a painting and a couple of other things she's taken, but I don't know what they are, but for her. Um, you know, I'm glad I found it, and I've recommended it to other people.
Linda Elsegood: I was a very good story.
Diana: Oh yeah. Um, I just wish that all those years ago that maybe somebody had, I don't know because there are no cure forms. There's no answer. They don't know what the cause is. So I don't know. I don't know where it Roy, where, but if there is something that LDL in that can help here, I'm going to stick with it.
And I sit really in the home. You've passed that on. I think that's a lot of mind over matter. I don't care from feeling better. I don't care. I'll try anything.
Linda Elsegood: What would you say to other people with primary progressive ms. Who is thinking of trying
Diana: LDN? Oh yeah, definitely. They've got to try it. I've got to try it.
I mean, my friend gets hers. Her doctor gives her hers. My mom point blank refuses, you know? But then he didn't want to give me LDN cause it was going to cost him 10 pounds a month. So why would he pay for LDN if he doesn't have to? You've got, you know, you've got every right to say, you know, it's not licensed, so we can't give it to you.
Yes, fortunately,
Linda Elsegood: thank you very much for sharing your story with us. I really do appreciate it, Diana.
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.