LDN Video Interviews and Presentations

Anna - England: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: This morning I'm joined by Anna from England who uses LDN for Secondary Progressive Multiple Sclerosis. Thank you for joining me, Anna.

Anna: That's a pleasure.

Linda Elsegood: How old were you when you first noticed that there was something wrong with you?

Anna: When I first knew something was wrong, I would have been about 14.

 I wasn't diagnosed until 2011 when I was 52 coming up 53 but it made sense as an awful lot of illnesses that I've had through my life.

Linda Elsegood: So what were you noticing when you were 14?

Anna: When I was 14 a doctor said that I had tonsillitis or something like that. I had a lot of flu-like symptoms quite regularly, and if I had actual flu or even a cold, it hung on for ages and ages. And the doctor said it was post flu syndrome or something like that. I thought when I found out, that's what it was. But I also had bad pain too. I have this sort of theory that hormones were involved in.

When I was 11 I was having not proper periods if you know what I mean.

Linda Elsegood:

So before you were diagnosed with MS, what was the typical day like for you? What sort of symptoms in that did you have?

Anna:  I think I had relapsing-remitting throughout my life. I used to remark that every year I had to give something up.

I was quite sporty and every year something went by the ball because it was too much. I was getting nearest to a diagnosis of menopause, so I suppose that it disrupted things and I thought that's what it was. I was so tired, just so tired. I've been with my present partner for about 11 years now.

So he's kind of come through with me and we used to drive into work sometimes, about an hour's drive to get to work and I just can't count for the first day in the car if he was driving, obviously not if I was driving and it was unusual, and I kept thinking: "Oh God, this menopause is really ragging me."

And I had a thought. Your bad back anyway. And that went one day, and that was it. And I got sent to various people to see what was going on.

 I worked for London underground at the time. That's where Bob and I met. And they said: " We're fed up. Were you taking time off? We're going to send you to a specialist, a back specialist." So I went there, and he said:" Something's wrong. This is not just back problems. You need to go to a neurologist." I was like, what? Why should I need a neurologist? And of course, I went there, and the rest is history. I was diagnosed.

Linda Elsegood: With the fatigue anything else?

Anna: Well, the back was bad. My walking was getting worse, but I thought that was to do with the back. But now I realize it's probably an awful lot more than that because I've got slight drops from a left foot. I fell over. I mean, all of the signs were there.

In retrospect, you can see it all. One day walking down platform was a train driver for the underground. So I had a heavy bag. I was walking down with the mate here, the door. I just scuffed the ball of my foot on the ground, which is the one with drop foot. And I went like a Gooden, flew at him, and he said he's nowhere to catch me or get out the way.

And I'm pleased he got out the way because he was about six inches smaller than me. I've probably killed him. But so all of the things like that, and I found that where whenever I walked, particularly on stairs and I always held the rail which previously I hadn't done that. But, so I was losing balance a bit and ability to walk and fatigued, I suppose with the worst symptoms. And still are.

Linda Elsegood: If you had to rate your quality of life on a score of 1 to 10 before you started LDN, 10 being the best, what yours would it be?

Anna: 2

Linda Elsegood: Okay. And how did you hear about LDN?

Anna: I think it was a lady on Facebook who I got talking to on an MS website and she ran an LDN one as well. We've just got chatting about it. I'm pretty sure it was through her.

Linda Elsegood: And how did you manage to get a prescription? Would your own doctor prescribe it for you?

Anna: He didn't even know what I was talking about when I went to the doctor. I mentioned it and he said:" I even haven't heard about it. " And he said:" Let's try this first." And he just wrote another drug to me.

So no, I didn't go through him. I went through the chemist Dickson's. It's in Glasgow. And a doctor at Clinic 158 and again, one lady put me in touch with them and she gave me the details and I've passed on quite a few since then.

Linda Elsegood: So when you started, did you notice any introductory side effects?

Anna: The clinic recommended I up it quite quickly and that didn't have any good effects on me because I actually felt like I had the flu each time they up the amount. So I again, talking to this lady on Facebook, she said, try Laura. And I think I was recommended to start 1 or 1.5 mls. I certainly started sleeping better, which of course makes everything else a bit better if you've had a good sleep.

Because I was waking every hour, every two hours,  whereas now I get four to five, no problem. So. It may not sound a lot, but it's much better. I go back to sleep again and that was wonderful. And I did have thought you're more vivid dreams, and I still do occasionally, but that's okay.

They're quite nice actually—some of them.

Linda Elsegood: And how long have you been taken LDN now?

Anna: About a year, I reckon. I think it was about April, May I started last year.

Linda Elsegood: And if you had to rate your quality of life now on that score of one to 10 being the best, what would it be?

Anna: You know what? It is still like a roller coaster with ups and downs but average though, I guess about 6 or 7.

Linda Elsegood:  Well, that's a long way from 2, isn't it?

Anna: It's a big jump from 2. Mostly I feel more settled than I was if that makes sense. Still emotional work occasionally. I cry most days, but it's not long, and it's not as angst written as it was. It's more like a physical function, a bit like having a way I have to have a cry. And I do take Gabapentin as well, which I think works better with the LDN. I'm not sure if that's even possible, but I think it is. And when I'm in need of one of those, I get a bit tearful because it's not chronic pain,

It's just there sort of sharpy that gets you.

Linda Elsegood: Is there anything else you'd like to add?

Anna: No, I was saying that taking LDN is quite a subtle effect but if I don't take it, things get worse. Does that make sense? I'm not trying to reduce the amount of time for why not 4.5 mls and I really didn't notice much difference to taking.

So I've dropped it down to 3.5, and I'm saying if anything changes really, but it seems right. I have spasticity in my right side, and it goes up into my groin, which is really painful.

Linda Elsegood: Thank you very much for sharing your experience with us Anna, and I have to say that I continued improving for 18 months, so let's see what happens in the next six months for you.

Anna: I hope so. That will be nice.

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.

Anita - England: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Anita from England. She takes LDM for multiple sclerosis. Good morning, Anita, 

Anita: Good morning. 

Linda Elsegood: Could you tell me when you were diagnosed with MS. 

Anita: Eight years ago, eight, yeah, eight, nine years ago. 

It took a long time, I think, to diagnose. I had lots of tests first. 

It wasn't this, it wasn't that, and eventually, after a lumbar puncture, it was diagnosed as MS.

It must have been longer than that then, I was about 46. Right. 

Linda Elsegood: And what impact does the diagnosis have on you?  

Anita: Well, I was in shock at first. So I must be honest, I didn't believe it, I was in denial. I really didn't think I had it as being a carer. A lot of my clients had MS and, um well, I didn't. I wouldn't accept it first, that I had it too.

Linda Elsegood: So the time you were diagnosed, you said it took quite a while. What were your symptoms at that time? 

Anita:  At times there were bouts where I lost all sense of balance; being sick all the time. On these occasions, normally, the doctor would give me an injection. I would try and sleep through a lot of it because that's all I could do.

Basically just continually being sick and my balance is all. Oh, and my waterworks actually, I didn't have a lot of control on occasions with my waterworks.

I was gonna stay working for the money but it is a disease and bursitis and everything and me, which is to do with balance and that. 

Linda Elsegood: So before you found LDN, how were your symptoms? 

Anita: So I had a severe attack, I can’t remember the year now when I ended up in a wheelchair. I was in a wheelchair for three years. Towards the end, I actually went on  LDN, which, helped me enormously. 

I was on Gabapentin, and all the drugs I was on I was a drowsy mess. I think I, you know, a lot of the time I wasn't really with it.

I was, you know, on so much medication that I was quite drowsy all the time. I only take the LDN now. 

Linda Elsegood: Well, let's, let's just try to stop short to what you were like before LDN. So before you started, what would you have deemed to be the quality of life on a score of one to 10. And 10 is the best. 

Anita: Right. Then about 4 really, cause I 

was feeling the wheelchair.

Linda Elsegood: Okay. And what would you say is today? 

Anita: Uh, seven. 

Linda Elsegood: Right. And may we learn how you heard about LDN? 

Aniya: I had just got hyperbaric therapy and one of the ladies there was on it. She told me about it, and I went online and obviously researched it, and I thought it looks 

quite good, well worth trying.

Linda:  Did you manage to get it from your doctor? 

Anita:  No, no. I live in Cornwall, and I get it from Dr Lawerence in Wales, though the actual prescription comes from Scotland. 

Linda Elsegood: Okay. When you first started, did you notice any introductory side effects?  

Anita: No, not really. Perhaps a little, as sleeping was a little problem, not sleeping too well, but that lasted a week, ten days.

So how was yours? Mm. Um, occasionally, I still, I'm a waterworks, uh, occasionally, um, on walking with a machine, I don't know if you've heard of them, which helps me. I am actually up and walking with, with this stick using the machine, which helps me to lift my left foot only. I have a problem with that. I manage to go quite a bit. I can walk on the flat now without the machine, but I do need it if I, you know, if I'm walking long walks or, uh, where Hills are involved.

Linda Elsegood: So you continue taking the LDN with us. The only drug you're taking now?    

Anita: Yes, yes.

Linda Elsegood:  Oh, that's good.

Anita:  I used to get real bad spasms, which have gradually disappeared. I don't get them at all now on the LDN. 

Linda Elsegood: That's very good. What would you say to other people that are thinking of trying LDN?

Anita: I would say it's well worth trying. I've found it to be very good, even mentally because, I was quite depressed for a time because being quite sporty and active before, it was quite a shock, to end up being in the wheelchair.  It's improved my quality of life. No end. And I’ve actually stopped the hyperbaric therapy, which was helping me.

I've stopped now because the LDN actually, helps with what the hyperbaric therapy was helping with.

Linda Elsegood: Is there anything else you'd like to mention? 

Anita: Well, I think it is a very good drug, and it helps me in all the ways with more shakes and everything. You know, everything. Well with MS, it seems to have helped me. 

Linda Elsegood: Thank you for sharing. 

Anita: That‘s a very little drug to take, you know, I'm only on the one drug instead of lots of different drugs, and it's not one that makes you drowsy.

Linda Elsegood: Yes. The fewer drugs you can put in your body, the better, isn't it? 

Anita: Of course. Yes, definitely. I do take quite a few supplements, like fish oils and zinc and things like that, which is helpful with LDN, as Dr. Lawerence said, which, I guess helps in slowing the disease when you're on LDN.

I have talked to others you know when I was going for the hyperbaric therapy I did. Actually, I like to chat with other people that I know are on it and they seem to benefit from it as well. Plus the lady obviously, who informed me about in the first place, she's improved.

She was never out of the wheelchair and she was a lot worse than I was.  and she's come walking with two sticks now. So yeah. Very good.

Angela - Wales: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Angela from Wales who has Multiple Sclerosis. Welcome, Angela!

Angela: Hi, Linda!

Linda Elsegood: Could you tell us when you first noticed your MS symptoms?

Angela: I think it was about 6 years ago, but I didn't know obviously that it was MS.

I think the first sign was when I noticed I woke up in the morning and one of my legs was feeling very numb.

 I think that went on for a couple of months and I just put it down to sleep. Being busy, working and with a family, I just ignored it, and it just went away. So I didn't think anything more of it. I think about 5 years ago I'd come back from a holiday in Canada and thought I had a virus.

I went back and forth to the doctors. They couldn't diagnose what was wrong with me. Then I lost all the feeling in my legs from my feet right up to my head and obviously got admitted into a hospital for tests and was eventually diagnosed.

 Linda Elsegood: What impact did it have on you being diagnosed?

Angela: It was very tough. I recently got divorced and it wasn't a great time. And it might've been to do with the sort of stress of that situation. My mother-in-law from my ex-husband had MS, and she had it for many years. I just thought I was going to end up the same state as she was, which wasn't great.

There was no real treatment that she seemed to have. She could hardly walk. She's in a wheelchair and basically didn't do anything with her life so I thought it was tough ending up like that.

Linda Elsegood: It's a very scary prospect, isn't it?

Angela: It was. When the consultant when I first was in the hospital said: " I think you're too old to have the MS." I was 46 at the time and then, of course, when they did the MRI scan and I came back to see her, and he said, well, no, actually you have MS. And thank you very much. Bye-bye. And handed me over to be off the floor. The consultants aren't that great at dealing with this sort of thing.  I just found it really difficult to talk to anyone because I just had in my mind this picture of my mother in law so it wasn't great.

But then you pick your server, and I think, they review you after 3 months, that to see whether you've got the real nasty type, and after 3 months then, maybe you realize it's not as bad. Your life still can carry on even with this diagnosis.

Linda Elsegood: So what was your MS like before you found LDN?

Angela: I think it was getting steadily. They say I have a benign type. I don't think I have the relapsing-remitting type, but every day I have symptoms.  I remember it was a Christmas time, and my daughter had come with me to try and go shopping, and I literally walked into a max shop with my daughter.

We just really walked into the shop, and I just had to say to her," I'm sorry, I've got to turn around and go home." I just felt I couldn't even walk around the shop. My legs just felt so bad that day, so it was like the numbness and the weird sensation, you know?

So I just knew. They weren't going to carry me the shop. So I, it had a huge effect on the quality of your life because I was still working, I'm still working now but I wasn't there without the LDN if I would still be working. The sort of extremes of temperature really affect and we were having a pretty cold winter. It just sort of really limit what I could do. I don't think the LDN has had any miraculous effect, but I think, most of the time keeps me stable and it hasn't gotten worse. I've had a bad virus of that time, and I've had a few problems since then with the mobility, but I think that's bound to the virus.

I think in terms of the fatigue it's had a huge effect on just keeping going and keeping outdoors. I think it's kept me stable.  I don't know where I would be  but I know at that time I was really starting to struggle.

For the next two years after I had this virus My mobility hasn't been perfect by any means but it definitely improved things. I think it gave me a bit more confidence. You sort of tending to sing like, no, I can't go out. I can't do this. I can't do that.

I mean, the only side effects I had when I first started to take it, I have a lot of spasms in my legs and I had a lot of muscle stiffness for the first two weeks, so I said: " Oh my goodness, this is going to make me worse."

But I persevered with it, and it's been fine. I haven't had any sort of bad sleep or anything like that. I tried to take the LDN in the morning and that doesn't suit me. It suits me better to take it in the night. So I just take a tablet at night from and that seems to work better for me.

Linda Elsegood: Did you have any other side effects?

Angela: I had the usual, sort of a nice fog, bad headaches, feeling a bit spaced out, dizzy and fatigued basically.

It was just horrendous, lots of sensation, bladder problems. I was taking antibiotics because I was having constant infections but now I realize all these years later that it was probably the MS. Now I haven't taken antibiotics for over 18 months I think. So I think it's definitely had an effect there. It's helped the bladder problems, the fatigue. At one point I was starting to get, not depressed, but starting to get very down about it all so it's helped to keep me positive with things. Once you lose your positivity, then you might as well give up.

Linda Elsegood: So how would you compare your quality of life now with before LDN?

Angela: Until I had this recent virus I would push myself to do more or less what I used to do. But within limitations I know I can't go walking huge distances but  I kept working. I've kept trying to keep the standard of what I do in my work up to what I used to do. I just feel it stabilize me somehow. I really didn't know where things were going to end up. I just thought my general wellbeing was a lot better. I think it lifts my energy levels really.

The other things that I used to have was problems in my eyes, flushing lights and  I'd see lots of spots in front of me. I don't seem to have so much in that either so I guess I got to rely on LDN and keep on thinking,  I'm afraid not to take it now because I don't know where I would be. Some people might think it's a placebo but I just feel it stabilized me certainly.

This virus has given me a bit of bronchitis but LDN keeps me stable.

Linda Elsegood: What would you say to other people who are contemplating trying LDN?

Angela: In the job I do, I've got lots of people, 9,000 people at work.

Some of them unfortunately also have MS, and they're very scared to take anything without a neurologist or doctor's advice. And what I would say is,l:" As far as I'm aware, there are no side effects." I think for the type of ms that I have, there are no treatments, no drugs so it's not doing me any harm.

It may be going good. I don't think you've got anything to lose really. Some of the drugs and I've been lucky enough not to need them, like Methotrexate it is basically poison, isn't it? So you're poisoning your system. I mean, they are drugs that they use for chemotherapy. As I understand it,  there must be a body of research in LDN to show that there aren't huge amounts of side effects. It goes to your system for four hours and it doesn't affect any of your major organs or anything else. So why wouldn't you try it?  I would just say give it a try. It might work for you, It might not,  It might have fantastic results just like me,  to keep you stable. All I can ask for is to try it. The medical profession doesn't have all the answers. If enough of us are taking this and finding benefit from it, then just gotta be something in there.

Linda Elsegood: Okay. Well, thank you very much for sharing your story with us.

Angela: You're welcome.

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.

Andy - Wales: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

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.

Allan - Scotland: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda: I'd like to introduce Alan from Scotland, and Alan has multiple sclerosis. Welcome, Alan. I wonder, could you tell me when you first started having symptoms of MS. 

Allan: Oh, that's a difficult one. I was diagnosed in 1986, but I probably had symptoms for at least ten years before that.

Linda: What symptoms did you have at that time? 

Allan: But it's the same. The symptoms bothered me the most. All my life is fatigue. I first started noticing. Terrible fatigue. I was driving. I had a job that required me driving from the North, of course, In those days I have to stop the car and go with sleep. It was just to get me together again and, uh, set off to the next customer. And I knew it wasn't right. It was not at fatigue. Other people didn't have that often. I went to the doctor but it was hard to describe it other than just feeling tired.

Linda: How old were you at the time? 

Allan: between 20 and 25.

Linda: so how did the impact on your social life?

Allan: It focused more on my business life, I suppose. Um, because. The problems were when I was driving and socially I didn't really notice it that I could drive above it. I can remember socializing. I can remember it being a problem in 1990. I mean as long diagnosed by them. But I went to the one world cup in 1990 it was to the other guy, and we all share the driving and, I couldn't take my turn drive, and I But um. I had to depend on others. I could drive for short distances and then I would, I would start to get tired and someone else that has to take over.

Linda: So what did you find, other than the fatigue, was that the only thing that bothered you at that time?

No, I, various sensory problems, tingling, pins and needles. Um, I can remember when I was driving, if I bend my neck, I would get a tingle go running Right from my back to my legs, to my toes. And it wasn't painful, And I would say myself do it just to, um, to see, to still real. 

What would you say to other people who are contemplating trying LDN?

Allan:  I did say I would never bring it up with someone that someone else brings it up. I would say, yeah, there's nothing to lose. It's still relatively inexpensive, and you could try it.  I don't feel there are no side effects of a thing. I did the very beginning. Your muscles, my life tightened up. Uh, I was the only one, two or three weeks. Yeah, two or three weeks. 

Linda Elsegood: Thank you for listening to this presentation. All past conference presentations can be found on our website, https://ldnresearchtrust.org/

Alex - England: Multiple Sclerosis (MS) (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

inda: I'd like to introduce Alex from England. You take LDN for Multiple Sclerosis. Thank you for joining me, Alex. 

Alex: You're welcome. 

Linda: Could you tell me when have you been diagnosed with Ms?

Alex: I was diagnosed with Ms in 2009.

Linda: Ok. And how old were you? 

Alex: I was about 31.

Linda: Okay. And what were your symptoms that led to your diagnosis? 

Alex: It's quite a long story because they missed around a bit, but one day I was driving to work and my eyes just went very blurry. I was having a problem walking and I thought it was because of that trip, but now looking back it wasn't. They put me on steroids. I got a little bit better. Went back to work. It was a stressful period. And then got diagnosed with relapsing and remitting MS

My Neurologist, he paused for a second and said: " You got Ms".

I found out about LDN through this talking.

Because I spent too much time researching and looking for things that could help. 

 I got it online trough a pharmacy that prescribed it to me. I think it was in Glasgow.

I have been on it a good couple of months.

Linda:  So if we go back to before you started LDN, what symptoms were you experiencing at that time?

Alex: When I wake up in the morning, my legs were like death and I was feeling I wasn't getting a nice sleep. And my boys were saying I was more restricted. And my eyes were messing up quite regularly. 

Linda: You said you were on LDN for how long now? 

Alex: 28 plus 28 plus two days. 

Linda: Okay, so it's like three months. 

Alex: Yeah. Basically.

Linda: So what has LDN done for you in those three months?

Alex:  I am sleeping so much better. When I wake up in the morning, I feel like I had better sleep and my muscles are not stiff anymore so I  can get out of bed and get downstairs with minimal trouble.

I was chatting with my wife last night, and I'm starting to engage more with people. I am trying to put myself out there. It's kind of giving me a push towards being more involved in things.

Linda: Sorry to interrupt you. And the three months you've done very well. When you first started, did you notice any side effects?

Alex:  No. I have had no side effects. There were no big vivid dreams or anything like that. 

I wish now I had gone straight to LDN. For me, it feels like it did so much more to me.

Linda: What would you say to other people who are contemplating trying LDN? 

Alex: Go for it. It's a shame that most of the doctors in this country didn't realize yet how much this does help. Like other drugs out there, there is a variety of other things out there that helps. We are all a bit different and then there is a little bit of trial and error. But it is been so fantastic. 

Linda: Good. Thank you very much for sharing your experience with us.

Alex: Not a problem.

Alan - England: Multiple Sclerosis; MS (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda: I would like to introduce Alan from England. Alan has multiple sclerosis.

Alan: Hello. Could you tell us when you first started getting ms symptoms?

Alan: Probably in my early twenties. The best part of 40 years ago. I used to get terrible headaches and tingling in my hands, and, the medical people put it down to migraines and growing pains and that sort of thing. And then they would disappear for years.

I'd get a bad headache, and I'm tingling in my hand now and again but nothing really bad. Nothing that I couldn't cope with. 

I was a young fit man and then back in the early eighties, they came back again. 

The same sort of symptoms came back, but more so, I went to the doctor.  He put me in for an MRI scan but he sort of diagnosed all that symptoms through the stress of my job because I had a massive job that was million times tiring man targets people working for me, travelling all over the country. 

Massive stress job. 

And so I changed my job and all my symptoms disappeared, so I never went back for the results of my MRI scan. 

Probably in 1988, the symptoms came back again.

And so I went back to the doctor and, he said: "Well, I'll send you for another MRI scan but you never came back for your previous scan results ten years earlier", to which I replied: "Well, the symptoms disappeared, so I wasn't really interested. And then he said: " Well, we had a doctor's dilemma that we couldn't tell you, because you didn't come back.

but we suspected you have Multiple Sclerosis at that time. 

 I was really pleased he didn't tell me because I'd had ten years of symptom-free, changed my job, moved house, did all sorts of things, without any worries that I might be able to have later on in my life. 

But when the symptoms all came back again, then they did an MRI again and told me that they were definitely a hundred per cent certain that it was ms.

And, I was totally devastated. I would say I was in the early fifties, pretty fit, playing great tennis, golf nearly every other day. I'm having a great life and all of a sudden they were telling me that in a couple of years I was going to be in a wheelchair. It was some pretty hard time.

Linda: So what were your symptoms at that time?

Alan: Well, my left leg used to get really heavy. If I was doing active things such as playing tennis, I'm like to play one set, and when I play the second set, and if I want it, that was fine. If I lost it, then I'd have to play the third set and I just couldn't run around because it felt as I just had a ball and chain instructed my leg.

So, I was losing the third set, and that was when I went back to the doctor and,  said: "Look, there's definitely something wrong with me, and I want to know what it is." So he told me about the previous MRI scan. 

And then we went from there to see a consultant and a final diagnosis.

Linda: And then what happens further down the road? 

Alan: Well, I got really depressed, terrible. I even attempted suicide and everything. I was succumbing in a terrible state and then all of a sudden I couldn't play tennis, I couldn't play golf. I couldn't go walking in the hills. I couldn't. I couldn't do anything that I used to do before.

I just got myself in a terrible state. I got really down. And then all of a sudden the guy that I was friendly with said:" Well, would you come to play bowls? And I said:" Bowls skim for old men". And he said: "I put his arm around me and said, Alan, you Bleep, bleep, bleep, cripple. And I looked at him and said, do you know what?

You're right. I can't do the things I want to. I'm a semi cripple. Why don't I go and play bowls? And it was like a new lease of life for me. I started playing bowls more than I used to play tennis and golf and things like that and got pretty good at it. Represented England in the Paralympics and, won a silver medal, Linda.

Linda: Oh, wow. 

Alan: Well, bowls saved my life. So, yeah and over the years I've had to manage my MS, until I heard about LDN and, that was just four, five or six years ago. And, I started taking LDN five or six years ago from Bob Lawrence and Swanzey, and I've been on ever since. And, my symptoms have not progressed hardly at all since in five or six years.

I'm virtually no worse now than I was probably six years ago before I started taking it.

Linda: You said you were secondary progressive. Is that right? 

Alan: I was secondary progressive. I was just gradually going down, down, down, and then It's just stopped. I'll go to the oxygen chambers every week and things like this, but,  that didn't really do, it made me feel better, but it didn't really progression.

LDN seems to have stopped it in its tracks.

Linda: Did you have any side effects when you first started?

Alan: Nothing. Absolutely nothing. Within a week of taking it, all the symptoms that I had, was tiredness especially. If I played bowls, I would play in the afternoon.

I'd come home and go to bed and not do anything else for the rest of the day. But that was fine. I could manage that. That's not a problem. Sometimes I would play twice a day, and I'm five years older, and I'm doing a lot more. So I'm like,I will put it all toward him.

Linda: So what else is LDN done to help you? 

Alan: I used to be sore in my muscle all the time, but you learn to live for that, and you don't sort of taking too much of it.

But no, unless I've done an awful lot of like stay, for instance, I drove most of the way now tonight. My leg will be really sore because I'd been sitting around in a car all day and I've done a lot so I take a sleeping pill and, rub some stuff in the leg and things like by tomorrow I'll be back to normal again. The tiredness is the main thing, the pain is another thing. I used to get up three or four times to go to the loo. It may be once or twice now, maybe.

The only thing that I find that affects me is alcohol. Whether that's because of the LDN or ms, I can't drink anything  I used to drink when I was ten years younger. But can anyone of us?

Linda: I don't know. I'm not there yet.

Alan: I can't drink.  Drinking affects my walking and nothing seems to stop that at all. So, I don't drink much at all unless I'm just going from my back patio to the bed and then I might. 

But most of my symptoms are all improved when I started taking LDN.

Linda: Good. So what would you say to other people who have been given that diagnosis of being labelled with multiple sclerosis and they are thinking about the LDN?

Alan: Well, first of all, I would say to anybody that has been diagnosed. It's not the end of the world.

There are certainly lots of worse things you can get it. I'm not saying it's a nice disease, but on the other hand, there's certainly lots worse ones around. And I think a lot of ms is about how well you treat it and your state of mind, etc. So many people say:

how's LDN going to affect my other medicine?" I have no idea but why don't you try it and see what it's like?  My doctor doesn't say I can take it. So, I'm not going to take it. I said:" Fine".  "You know, probably my doctor said, you don't know what it's doing to you in 10 years time"

and I said, will you guarantee I'll be here in ten years?

I say to anybody who's thinking of taking it, try it and see. If it doesn't do you any good, don't take it. But if it does, keep on taking it. So, I'm a big believer that you should try anything that might help you and if it doesn't work, okay.

So you've paid some money, and it cost you some time and effort, I understand but it may have you some good.

Linda: Okay. Well, thank you very much Alan. Any questions or comments you may have. Please email me. I look forward to hearing from you. Thank you for joining us today. We really appreciate it, your company. Until next time, stay safe and keep well.

Adrienne - England: Multiple Sclerosis; MS (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda: I'd like to introduce Adrienne who has multiple sclerosis and is from England. Welcome, Adrienne. 

Adrienne: Good morning.

Linda: Thank you. I can still remember meeting you. 

Adrienne: Yeah, 

Linda: it was awesome. So when were you diagnosed with MS? 

Adrienne: About 1977, age 27

Linda: A long time ago. How old were you, and how did the diagnosis affect you? 

Adrienne: Well, yeah, I think it's because. I mess up the many talked about and um, it was sort of like a bolt out of the blue, going to see the specialist. You've got MS background. I can’t say 100%. You got it. But 99%, go for lumbar puncture. Yeah. I ended up getting lumbar puncture, which is very painful and it didn’t do anything different. So. It's a bit of a waste of time. 

Linda: And what were your symptoms at that time? 

Adrienne: I was just tripping up, kept tripping over, you know, and I was walking and really the pins and needles in my legs really, slight blurring of vision. So that was when I was 27. Because you've got children, you've got to keep going. 

Linda: Yeah.

So what happened in the years in between finding LDN? 

Adrienne: It just gradually got worse and worse. My brother was 16 months older than me. He died about 5 years ago at age 52. So I was watching him decline and knowing that I was going to decline. Thanks, I didn’t decline.  Hyperbaric treatment. And the LDN

So the LDN has been a most positive contribution to the alleviation. Stop the spasming.  It makes me less likely to fall asleep during the day.  I'm the help to my feet to think more mentally acute has continued.  My feet...

Linda: When? When did you start taking LDN? 

Adrienne: I think 5 or 6 years ago.

Linda: and were you able to get it from your own GP or did you have to get a private prescription? I have a very understanding physician GP who agreed to cannabis also. He said that he might knock sometimes. That kind of bespoke. Yes. Come up with. I forgot his name, but his mom and I had a, um, acquaintance that day, hyperbaric oxygen treatment.

All, so I looked into the information sent by you. He agreed to let me have a go at it.

Linda:  what did you find it did for you initially? Did you have any side effects?

Adrienne: Slight sleep disturbance. Nowadays still happens, but quite mildly. So now, that's fine.  

Linda: How would you sum up what LDN has done for you? 

Adrienne: Well, I'll be honest, give me a, apart from the vaccines, the problems back then didn't get worse and worse. It makes me feel as though I'm contributing a little bit until improving in inverted commerce—my condition. I talk to the undesirable side effects, lethargy, the mental fogginess because all these, medications suggested I've tried by myself, has made possible to have to tell them how it was espousing, tended to send me doo lally

And that wasn't probably in control of my mental capacity. No, that's a horrible feeling. 

Linda: That's a horrible feeling when you don't feel in control mentally, isn't it? 

Adrienne: Because you, you're aware of it. You're aware. Worried about things, stupid things. 

Linda: Oh, I know. 

Adrienne: That has helped you to seem able to go to act without the horrible side effects of the other medication. 

Linda: Yeah. What would you say to other people who have MS who are contemplating trying LDN?

Adrienne: I recommend it, but I must say that being that once or twice I have recommended it, the person than to cross BMI. Yeah. You have nothing to lose by trying it.

Honestly, him today, it works, yeah. Yeah. I would recommend it.  You know, Each person must work out their own, know what's best for them, their own salvation. 

Linda: Well, thank you very much for sharing your story with us. 

Adrienne: Okay. Thank you so much for all the help and assistance you’ve given me over the last five years.

Adam - US: Multiple Sclerosis(LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Adam: Hi, Linda. 

Linda: Could you tell us when you first started to notice MS symptoms? 

Adam: Well, I was actually diagnosed in January of 2007. I had a lot of symptoms that were unknown for years, prior to that, prior, before 2000.

Linda: Well, what were your symptoms at the time of diagnosis. 

Adam: Well, I had a, a massive migraine kind of headache at the base of my skull. I had long-lasting carpal tunnel symptoms through my arms running up to my shoulders. I had a loss of feeling within my arms, excessive loss of balance, loss of muscle.

There was a kind of tight, extreme fatigue for years, sometimes paralysis when I'd wake up in the morning. Excessive sweating, twitching and bladder and bowel control.  

Linda: so what medication were you offered at that time? 

Adam: Copaxone daily injections. 

Linda: And how old were you then, Adam? 

Adam: 34 

Linda: How did it impact on your life being diagnosed with MS?

Adam: Pardon me? 

Linda: Having the label, MS. 

Adam: Actually, it wasn't bad. The diagnosis was okay. It gave a reason for what was wrong. I didn't think I was crazy at that time. I think a lot of times, being misdiagnosed for, for years with so many different things. That was more of an impact on my life.

Linda: and how did you get on with the Copaxone?  

Linda: Right. So I'll, I'll ask you that last question again. How did you find taking the,  How did you get on with taking Copaxone?

Adam: It was a daily injection. It wasn't so bad, doing the injection. For me, it was more of an impact on the financial burden, to my future how I would afford to be on this medication if by chance I lost my job. Concerns like that. 

Linda: How long did you take Copaxone for? Are you still taking it?

Adam: I took it through starting LDN, and I continued to take it probably about six months after. So I would say I was on Copaxone for at least a year and a half.

Linda:  How did you find LDN? 

Adam: My wife emailed me a YouTube video clip. She joined a support group, and someone had blessed her and sent her a, just a short little YouTube video clip, and she forwarded to me  

Linda: easy to get a prescription for LDN?

Adam: For me, it was, I did my research beforehand. I went while prepared for my neurologist who was prescribing me the Copaxone at the time, and I basically laid it out in front of him and demanded that that's what I was going to try next. And I agreed to continue taking Copaxone at that time.

Linda: And was it easy to get the prescription filled at first?

Adam:  Not necessarily because he didn't understand how to write it. He didn't know much about it. I found out more on my end, how to make it myself, which I don't recommend. Um, but then I think within the first month I was able to get him to write a proper way, you know, a proper script for it.

Linda: And when you first started, did you notice any introductory side effects? 

Adam: Zero! My wife said that, that my leg twitched for a couple of or one night. Um, but I don't, I don't think that that was connected.

Linda: And how long did it take for you started to notice improvements?

Adam: Very next morning. 

Linda: What did you notice?

Adam: I went from feeling like I was 85 years old when I would wake up, every day for the last ten years to feeling like I was 15 again. That was the main thing right off the bat. I, I wasn't fatigued. I had a ton of energy, and I couldn't explain why, other than the LDN. 

Linda: Did it help with your other symptoms?

Adam: In time it did. In a very short time, actually, at the time when I started LDN, I had flu-like symptoms that wouldn't go away after two courses of antibiotics. And that flu went away within, I believe, three or four days. A lot of my bladder things like a bladder infection, that went away within two or three days.

Just about everything, all my symptoms that I had with the exception of anything that was permanent, like nerve damage, all of those symptoms went away. 

Linda: If you were to rate your quality of life before LDN on a score of one to 10, what would it have been? 

Adam: Probably about a two.

Linda: And what would you say it is today.

Adam: Probably about an eight. 

Linda: That’s amazing. Isn’t it? that it's very good. It is. What would you say to other people who are contemplating trying LDN? 

Adam: well, if you're contemplating trying LDN, you've already heard about it, which is the first part, and I think that's the most important part. For me, it works.  I'm a strong believer in it.

I tell whoever I can about it. My biggest thing is, you know if you know about it, you should, you should look more into it and don't give up. Just because one doctor says, you know, I don't agree with that because it's maybe not FDA approved in the US or different places like that. Just be persistent and keep trying.  For me, I lucked out, you know?

Linda: so how would you say your life is now? Would you say it's more or less back to normal? 

Adam: I would say it's about 90% back to normal. My biggest benefit, I probably should have said this a couple of minutes ago, but my biggest benefit was I was able to get off of the Copaxone, which is a daily injection. And at that time, when I started at my insurance was paying 2,500 every month. And that fear of, you know, worrying about how I would afford to continue that treatment is away because now I'm able to not rely on daily injections. I don't take them at all. And the LDN costs me $65 like us dollars every three months without insurance.

So it's, it's affordable, and it's, you know, that worry has gone. 

Linda: Did you notice any difference in your health once you stopped taking the Copaxone? 

Adam: When I stopped taking Copaxone? Yes. No, it was, no. 

Adam: Some of the other things that were, you know, leading up to my diagnosis of the ms, you know, those went away after I was diagnosed, but I think with the LDN, I pretty much don't have anything that I really worry about and have any type of symptoms.

Linda: What does your doctor think to improvements since you've been on LDN? 

Adam: he's amazed. However, my doctor, you know, talks a lot and says he'll tell all his patients, but since March of 2008, he hasn't told one person. 

Linda: More importantly, what does your wife think? 

Adam: She's definitely happy and can't believe the change.  We were actually able to conceive.  We had our first son.

Linda:  That’s a blessing. Thank you for sharing your story with us today.

Shirin from England shares her Multiple Sclerosis (MS) & Low Dose Naltrexone (LDN) Story from LDN Research Trust on Vimeo.

Shirin from England was diagnosed with Multiple Sclerosis (MS) in 2008 after experiencing poor balance, bladder control, fatigue, memory issues, weakness and trouble walking the previous year.

She read an article about Low Dose Naltrexone (LDN) in her local newspaper, which is how she found out about the medication. After asking her GP for a prescription, it was rejected, so she sourced it privately instead and started taking it just over a year ago. 

Shirin experienced no side effects at all, and noticed improvements in her fatigue, bladder control, physical weakness and memory.

When asked what she would say to those thinking of trying Low Dose Naltrexone (LDN), Shirin suggests they think seriously about it and states how it “might change their life.”

This is a summary to listen to the whole interview please click the video link.