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Linda Elsegood: I'd like to introduce Andy from Wales, and Andy has multiple sclerosis. Welcome, Andy. Could you tell us when were you diagnosed?
Andy: Thank you. May 2005
Linda Elsegood: All right, and how old were you at the time?
Andy: I was a 49.
Linda Elsegood: So what was it like being diagnosed? What sort of symptoms did you have at that time had you had them for long?
Andy: I probably had symptoms for about 9 months, the first symptom was eyesight really, I suppose, the diagnosis, shortly after the lumbar puncture, the MS seemed to come on, I was getting this numbness in my thighs and I developed a limp on my right leg, coldness. Yeah, cold, cold leg sort of thing. And that's actually how it started, right?
Linda Elsegood: Well, then how did it progress?
Andy: Pretty rapidly, really within six months of being diagnosed, I couldn’t work and when I was walking I was staggering like I was drunk, quite depressed. My eyesight was rapidly going, very cold legs, a lot of numbness. Then eventually, my hands were losing strength, quite weak in the hands and then she developed the MS hug but people know about that. And then, I suppose by March 2006, I was partly using a wheelchair. Depression and suicidal thoughts. I went downhill so rapid, right?
Linda Elsegood: But it's also, as you were saying about walking staggering as though you're drunk. It's very depressing when people assume they see somebody staggering, you're immediately labelled as somebody who's drunk who doesn't know what they're doing and shouldn't they know better—only 10 o'clock in the morning kind of thing.
Andy: Exactly. You’ve just got no control over it really, it’s quite embarrassing really. After a few months of being diagnosed, I was using a walking stick, it was a rapid downhill regression.
Linda Elsegood: What kind of MS have you been diagnosed with?
Andy: Well, they couldn't put their finger on it, but it's probably progressive in my opinion. I'm not relapsing or that type of thing. I think it’s primary progressive.
Linda Elsegood: So how did you learn about LDN?
Andy: Well, the first thing I knew was there's a TV program on our local news, BBC Wales and a chap called Dr Boblow from Swansea, he had a patient, a lady who's having trouble reading there, and she couldn't focus their eyes on the page, and she couldn't read in books, and she started to use LDN, and the short time she was able to read books again and she was feeling much better. Okay, well let's find out some more about it. So it's the honour society website, to see what people are talking about.
So I asked a few people who've been on LDN for, well, it seems quite a safe drug and there's nothing else available for me, really. So let's give it a go.
Linda Elsegood: so did your own doctor prescribe LDN for you?
Andy: No. No. he offered STEM cell treatment, I didn’t want to do that really. I thought LDN seemed quite safe really so i thought I've got nothing to lose. Right,
Linda Elsegood: so you've got it privately.
Andy: Yeah, I had a private consultation online, and basically this doctor asked a few questions and wrote me a prescription and sent it to the supplier, Dicksons, up in Glasgow. It took a few days to come and then I started the drug.
Linda Elsegood: how long have you been taking LDN now?
Andy: March 2006 I started. So about 5 years.
Linda Elsegood: Yeah, so how has it helped with your MS?
Andy: Oh massively, My eyesight started to come back, it sometimes goes a little bit but it comes back again. In terms of the MS, I’ve got much more feeling back in my legs. The coldness is more or less gone most of the time. The strength in my hands has come back and said my eyesight's fine. And I've still got a bit of a limp on my right leg, it doesn't bother me. I mean, my leg doesn’t feel like it used to but it’s better than before. It’s vastly improved my life and the only thing I can put that down to is the LDN.
Linda Elsegood: Do you have any MS symptoms now?
Andy: Yeah, I mean I get a bit of nerve pain in my right foot, I think I've got rid of most of the pain. I can’t drive long distances. I can drive maybe 50 miles because of the pain in my right foot, especially when it’s enclosed in a shoe. So yeah, I would say before I started LDN I couldn't even drive. I've got a pretty decent lifestyle now. I do okay, my legs get a bit wobbly but in general, I’m pretty good.
Linda Elsegood: Yes. So did you have any initial side effects when you started taking LDN?
Andy: I think the usual ones, vivid dreams and a bit of insomnia, they don’t last too long really, that's it. Some people get slightly worse but it didn’t seem to affect me that way. And I think I started off at 3 mg. I'm up to four 4.5 now. So no, no real side effects as such.
Linda Elsegood: will you continue to take LDN.
Andy: Yeah. It's the best thing I've got.
Linda Elsegood: So what would you say to other people with MS who are thinking of trying LDN?
Andy: Oh, I'd say try it, without a shadow of a doubt, you’ve got nothing to lose, if it doesn’t work you come off it and you’re back to how you were. I think some people give up on the LDN because you feel worse initially. My advice is just to stick with it. Give it at least a month. If you are feeling a bit worse just lower the dose and build it gradually, you'll know the dose and just build a practice. It seems to work for most people, it won’t work for all. It’s worth a try. It can change your life so much.
Linda Elsegood: So what does your wife think of the changes in you?
Andy: Oh wow, she's amazed.
Linda Elsegood: So would you, would you say that you've got quality of life back?
Andy: Oh, definitely. Definitely. I'm back at work for the full time. I'm doing the best I can right now. I'm not complaining, I’ve been lucky I found the LDN.