Linda Elsegood: Today, my guest is April from the United States who takes LDN for multiple sclerosis. Thank you for joining us today, April.
April: Thank you for giving me this opportunity.
Linda Elsegood: So could you tell us about when you were diagnosed with MS?
April: Sure. I was diagnosed late in life. I guess I was diagnosed at age 43 and really leading up to that diagnosis, I didn't have any significant health problems. I did suffer from infertility in my thirties, but thankfully I had children and they were ages five and eight when I was diagnosed.
Linda Elsegood: I'm just trying to piece together in my mind, you didn't suspect that you'd had anything wrong with you before you were diagnosed? Is that what you're saying?
April: Yeah. That came on very suddenly for me. I woke up one day, it was actually March of 2015 and I woke up one day with the entire right side of my body numb. I had a few symptoms about a week before where I had a little numbness on the top of my leg and I had some tingling in my legs and I had some swelling in my feet, which was odd to me. It happened very suddenly where I just woke up and was just completely numb head to toe on my right-hand side. At that point, my husband and I were obviously very frightened. So we went to the emergency room. They ran an abundance of tests where they ruled out a stroke. They ruled out other critical illnesses, but then they released me and they told me to follow up the next week with my general practitioner so that I could track down a diagnosis. From there, my general practitioner referred me to a neurologist who very quickly ordered an MRI and spinal tap. So with the results of these two tests, I was given the diagnosis of multiple sclerosis and it was about a week and a half from my emergency room visit. So I got that diagnosis very quickly. I do consider myself lucky in that regard because I do hear of so many people that struggle with symptoms for years and can never really nail it down. Certainly, I had an answer very quickly. So an autoimmune disease, multiple sclerosis was not new to me. My father also was diagnosed with multiple sclerosis. He too was later in life when he was diagnosed but he also lived with a lot of other health problems, so he would tell you for him that multiple sclerosis has been a pretty benign disease for him, whereas I didn't feel that at all. I felt like it hit me very suddenly and very hard. My neurologist noticed me, did go ahead and admit me to the hospital so that I could go through the steroid treatment.
So I was admitted and I went through three days of the steroid treatment and then I left the hospital and I planned to start a disease-modifying drug Plegridy. I had the expectation that I would be fine, that I would be on the mend and I would have no other problems after that. It didn't work that way, you know, I continued to decline.
Plegridy, I did not respond to at all. In fact, I went further downhill with that. So very quickly I actually switched neurologist and she wanted me to switch over to Tysabri. So once I got the approval from my insurance company, that's what I did. But I continued to go downhill, soon after starting Tysabri, I went completely numb.
So I say I was 95% numb head to toe on my left side, right side completely. I just was completely numb. I had trouble with my vision. I wasn't driving at the time. I was extremely fatigued. I couldn't work. I didn't really feel like I could take care of my family. I was in really rough shape.
I did feel like I hit rock bottom, which for me, I think was a blessing because it made me look for other avenues. So that's when I started doing a lot of research. I had a family friend who had great success using diet and lifestyle changes to control her MS. So again, once I hit rock bottom, I said, well, it won't hurt to try that.
So that's what I did. I radically changed my diet. I actually followed and still do to this day. I follow the protocol. Completely committed to it. I still am doing that today. It was at that time and really the only time since my diagnosis that I saw any improvement. It really happened overnight for me.
Within two weeks of starting, my numbness and neuropathy were almost gone. My eyesight was coming back to normal. I was back at work, I was taking care of my family. My fatigue was much better, and each day the great thing about it was each day I could see improvement. So I felt really good about that.
I did not want to continue with Tysabri. But I also did not feel confident. I did not feel that I could do just that and be okay. So I started researching other avenues. On Facebook. I kept seeing people refer to LDN and so I started researching now and they pointed me to the LDN Research Trust Facebook group.
I joined that and then I found the research trust website, which gave me a wealth of information. So again, I just started diving into the research on LDN and I thought, it's such a fascinating treatment option. It seemed to be much safer than what I was currently doing, which again, was still Sabri.
I really was interested in starting on LDN. I did read where people struggled to find a doctor to prescribe LDN. I was fortunate because my neurologist, when I asked her about it, even agreed to give me a prescription. So she wanted me to still stay on Sabri but she would go ahead and give me a prescription. So she gave me a prescription for three milligrams of LDN. I started out with the goal that I would stop Tasabri at some point. Once I felt comfortable with that, if it was working, the LDN did work for me.
I started LDN on March of 2016 and that was almost exactly one year after my initial diagnosis. After the first dose, I was one of those folks that felt the change. Immediately I felt a lightened mood. I felt fatigued. I felt that my fatigue was reduced. I felt an improvement, but again, even more of an improvement once I started delving in as it pertains to the fatigue.
That felt amazing. I hear people talk about sleep disturbance I did face a little bit in the first few nights but that quickly went away. I also hear people talk about vivid dreams and really I never had that issue. I've never noticed any changes in my dreams taking LDN. Once I got past the first few nights, I didn’t have any sleep disturbance.
At that point, I slept like a baby and I still do to this day. I sleep very well taking the LDN. The one scary thing for me though when I started LDN is that I did notice that some of the symptoms I had gone away from me kind of came back more with burning and tingling with MS. It wasn't like I felt that I was in a flare or relapse.
It's just that, again, things that I had, thankfully kind of written off, had started to come back and that occurred really for the first few weeks of LDN so much so that I thought about stopping it. I almost stopped it but the LDN research trust Facebook group at the time had a wonderful admin that messaged me privately.
We communicated and she really encouraged me to stick it out and I did. Thankfully, a week later all of those symptoms went away and I started seeing improvements. Really it was at that point that I told people I felt normal again. It was a year after diagnosis and I really felt normal and it felt amazing.
Because I am a very risk-averse person, I did continue with walls, LDN and Tysabri for almost another year. So it was February of 2017 when I finally got the courage to stop Sabri. My neurologist was very discouraging of this decision. She thought that for sure I would have a relapse once I came off Tysabri.
She did support me anyway and I'm so happy with my decision. Since 2017 I've used walls. I've used LDN and I do take some supplementation, but typically with vitamin D to treat my multiple sclerosis, I will say that one symptom that I've struggled with for a long time after being diagnosed was brain fog.
So LDN, as well as walls, helped me with the brain fog but I still struggled with it. I'm an accountant. I'm a professional. I'm expected to come to work and be able to think very quickly. I was very self-conscious about the fact that I didn't feel with the brain fog that I was working quite as efficiently as I did before.
In August of 2017, I increased my dosage of LDN. I'm related by just splitting a pill. So I was taking LDN in a pill form and I just have one, and I took 4.5mg, and really overnight, it was amazing. I guess at that point I'd found my perfect dose because it just completely knocked out the brain fog.
I went back to my neurologist. She upped my dosage at that point, to four and a half milligrams. I've been on that since August of 2017.
Linda Elsegood: What an amazing story. Very, very interesting. You were actually a year younger than me when you when you were diagnosed 34?
Linda Elsegood: Wow.
Well, that is really something and you're so lucky to have such an understanding neurologist.
Linda Elsegood: Do you know if she's prescribing LDN for anybody else now?
It's interesting because I say that she would not have told me about LDN had I not asked her but as soon as I asked her, she was very forthcoming and said yes. She prescribed it for other people. So very easily. She's been very supportive of me since I've gotten off of Tysabri and she seems very pleased every time I come in to hear how well I'm doing and I do hope that helps others, that she'll readily prescribe it for others as well.
What can I say? An absolutely amazing turnaround there and to get diagnosed so quickly as well. Another thing that I say with LDN that I'm lucky about is I don't get sick, knock on wood, because I am superstitious but I still have younger children at home who bring home all kinds of illnesses but I do manage to stay very healthy. I rarely get sick and I do attribute that to LDN.
Linda Elsegood: Wow. Well, as I say, an amazing story, and thank you very much for sharing it with us.
April: Well, thank you. I'm just so thankful for everything you've done. I'm so thankful for the research trust and all of the information because like I said before, that's where I started when I was researching and I found so much wonderful information out there.
Linda Elsegood: Oh, thank you.
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