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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.