Barbara from Germany shares her Multiple Sclerosis (MS) and Low Dose Naltrexone (LDN) Story

Linda Elsegood: I'd like to introduce Barbara from Germany, and Barbara has multiple sclerosis. Welcome, Barbara.

Barbara:  Hi, Ninja. 

Linda Elsegood: When were you diagnosed, Barbara?

Barbara: I was diagnosed in 2007. Okay. 

Linda Elsegood: And how old were you at the time? 

Barbara: I was 45 just when I was diagnosed, um, which came exactly two days after I tuned. 45.

Linda Elsegood: What were your symptoms at that time? 

Barbara: At the time, I had very few symptoms I was living in Australia at the time, and I'd been out on a Bushwalk with a group, um, and we'd after we'd been walking, or I'd been walking for, I don't know, three-quarters of an hour, so my legs sort of started to give I couldn't carry on walking. It was very, very strange and I just had to stop the walk. Luckily, we didn’t walk in the Bush. We were just walking along the beach, and there was a road run in parallel to where they were walking. So, um, somebody came with me, and we just walked very slowly, sort of onto the road and waited there, sitting on a bench, and then eventually somebody else from the group came to the car. Um, so it was very lucky, you know, the circumstances. Um, because I could have been out with that group in the Bush, and it would have been very, very difficult to get me back.

After I'd been sitting with the person for a while I started to feel fine again, and then I had a lift back into town and then took the bus back to where I was living, I only remember getting off the bus feeling perfectly fine and walking home without any problems.

But obviously this kind of incident kind of shook me up a bit. And I went to see my doctor, my GP and told her about it and she said, well, I really don't know what this could be, but I'm going to take it seriously and I'm going to refer you to a neurologist. And that's what she did.

I went to see the neurologist and described what had happened to me, and she said I'm going to send you for an MRI, which she did, and I have the MRI. When she had the films back, she said this is what I thought, you prove she came, but I wanted to make sure before I said anything to you. You've got multiple sclerosis, and at the time she said it was relapsing-remitting. And now last year. Summer. Um, I had a major episode and I, after I'd been in hospital and had the steroids, um, I went into a clinic for them as sort of rehabilitation places, um, brought about five weeks and the doctors there said he was, um, secondary progressive and I mean, I now have symptoms all the time.

You know, I mean, until, when was it, 2009 I had very few symptoms. Then, you know, I had problems and, um, I couldn't run. I mean that I noticed that even before you have this sort of incident on the walk that I couldn't run, I tried to run fand I couldn't do it.

Linda Elsegood: The doctor said that you were secondary progressive, what were the symptoms then?

Oh, this was last year, you mean? Well, I sort of, now when I go out, I have to really use a stick most of the time because my balance has been affected really quite badly and I can't walk I mean, it depends, you know, it’s different from day to day, some days are better than others, and I'm sure everybody who has ms experiences that, um, some days I find it really difficult to walk more than 10 minutes at a time.

Um, and I also feel very stiff after I've been sitting down for a while you know, so you have been sitting at a desk for quite a while working and then I have to get up, to go to the toilet. Um, I do find the kind of, really difficult it takes me a little while to get going, but then I'm okay.

That is just the sort of initial other symptoms like fatigue and bowel and bladder and sleep. Obviously, I'm tired at the end of the day, but because I do things all day and I mean, you know, I don't think I'm, I'm usually tired.

So that's, that's not an issue. Um, my balance really isn't very good.

Linda Elsegood: What about cognitive problems? 

Barbara: I don't have cognitive problems. I, that, I mean, in this clinic they did do ten cognitive tests, and I was fine. I mean, it was well within the range of, uh, you know, um, healthy person and, um, those, that there's no problem there. Um, and I had to come in early enough. I had an appointment with my new biologist on Monday, and he did this, um, kind of things. Okay. Whereas, you know, for example, he has a tune in for, can you put different places, you know, on the arm and on the, on the ankle and stuff.

And I remember when you did it last time, I hardly had any agree with anything in my uncle. Um, and to, and on Monday I could kind of feel a little bit, and he sort of. Said afterwards, well, they sued me in the pool in an improvement there that you use, sort of seem to be able to feel the little vibration bit better.

I go and have a monthly  B12 injection there. And he said, well, he's determined B, I mean, not sure. You said that there is an improvement. They use the test by hand, you know, when you have to tune your race and stuff like that. And he said, well, your hands are really very good.

I mean, I, in the summer when I have this major episode, my left hand was sort of paralysed and I my index finger was sort of permanently bent it was sort of like crooked. It was horrible, and I couldn't eat with that hand, and that is all gone now. Luckily that is all gone back to normal.

So my hands are fine. So that is a great relief, obviously. 

Linda Elsegood: So when did you discover LDN? 

Barbara: LDN? I was diagnosed in 2007 when the neurologist diagnose me, want you to put me on to some drugs right away, you know? And I sort of said, you know, I don't, I want to explore some other things.

And then I've found the Best diets. And I spoke to Andrew a few times as well, and then I researched that, and then I found the resource centre. I mean, the website, you know, I'm talking about, and I went on the website, and I think I read about LDN there. I mentioned it to my GP at the time, and she was originally from Yugoslavia.

And she said I've used in Yugoslavia to treat, um, alcoholics. Um, and I didn't really realize it could be, you know, used as a treatment for MS. And she was quite supportive. And she said, you know, if you want to get it a try, I'll support you in that. Um, and when I mentioned it to my urologist.

I changed neurologists because the woman I originally see retired for health reasons, and I went to see another neurologist, and I asked him what he thought of LDN or whether, you know, of it, he said no, he didn't think there was anything to be gained by that. I didn't pursue it in the end, because at the time I had so few symptoms, you know, and  I kept to the diet. I didn't really need to do anything else. 

I started LDN at the end of November of last year. 

Linda Elsegood: Right. And did that do anything immediately for you? 

Barbara: Yes. Well, it was more or less immediately.

That's still going on. Now. I sleep really, really well. That's mean fantastic. I mean, I didn't really have any problem I was, you know, sort of suffering from insomnia and new things like that. But I have noticed that I go to sleep really quickly. I sometimes used to have problems going to sleep, you know But I go to sleep really quickly now and. Sometimes I don't even have to get up for the toilet in the night at all. Um, some now I, um, I do have to get up once to go to the toilet. Then like last night I did, but I then go back to sleep more or less straight away, you know, so fine. Um, I’m kind of had very happy.

Sometimes the backs of the back of my leg, it was sort of like, muscles, you know, like when you've been hiking a lot. Yeah. Would the next day your legs to the field a bit strange and you want to sort of have these pains, and it was like that. The pain was like that, and that has more or less gone.

Since I've started taking LDN, I do sometimes have them still these pain you know, my muscles, but I'm not anywhere near as often as I used to have them. So those are, I would say, the most obvious improvement. I also. Find that when I do things like cleaning, which I find sort of physically quite strenuous, I do a lot of walking.

I do recover more quickly. I do have to still sit down, you know, take a rest, kind of have a bath. I do think that it's quicker and better. Like last week I did some cleaning, and then I did sort of sit down for a while we did something else, but then I went for sort of 20-minute walk that park and then walked back for 20 minutes.

And it was, I mean, I wouldn't say it was difficult, but you know, I instead of wasn't, I did feel my legs, but I, I was able to do it, you know. 

Linda Elsegood: So your doctor prescribed the LDN for you, is that right? 

Barbara: No, no, no, no, no. I know. I told my doctor LDN. Um, I mean, here in, Germany, it's not really well known.

Um, I said to him, I told him about it, and I gave him all information I downloaded all the stuff from me and ms. For him and gave it to him, and he'd read through it. And then next time I went to see him, he said, well, would you like to do that? And I said, well, yes. And he said, okay, well let's, you know, the only thing is I'm not quite sure how you'd be able to get it.

And I'd try to get it. There's an international pharmacy here, and they said they weren't able to get it they have never heard of it either. I mean, they should know what I'm talking about. Anyway, I called Dixon pharmacy in Glasgow, and they were very helpful. Very nice. Um. And Paula said you have to get a UK prescription for him to send you that.

You get via email, and that's what I did, and it was really easy. I was surprised at the end. Once I got onto it, you know how quick, how easy it was. I filled in the form on the web, and I sent them a letter. And just within a couple of days, they sent the prescription to him, Glasgow, and then the book in a few days.

Linda Elsegood: Did you have any initial side effects when you started? 

Barbara: No. No. The only thing is as happened of time. I did have vivid dreams back then. I mean, they were not nightmares or anything like that, but that happened to a couple of times in the beginning.

But I mean, I wouldn't really call that a side effect, you know what I mean? Yeah. It may have happened even if I hadn't been taken LDN, you know, you have no, no, no. 

Linda Elsegood: So how would you say your life has been since you started LDN? 

Barbara: Um. I think it has improved in, as I said, no, I sleep better, and that makes such a difference, I think to anybody.