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Linda Elsegood: I'd like to introduce Crystal from the United States to take LDN. Thank you for joining me, Crystal.
Crystal: Thank you.
Linda Elsegood: Could you tell me when you first started to feel your Ms symptoms?
Crystal: I wonder if some of the strange symptoms I had during my last two or three pregnancies was really a mass related. I would get tingling and numbness in my fingers and visual disturbances like blurry vision or spots in my vision. And we would just wonder what in the world is going on.
I asked my OB about it and he just kind of dismissed it as maybe babies on a nerve or something like that. And nobody ever thought anything of it. And I didn't have it after pregnancy. So I don't know if that was related or not. It's hard to remember the specifics of everything because of the fact that we were just kind of blew it off. I can remember weird things. A couple of years later after my last pregnancy, this may be a year afterwards, I can remember some weird things like waking up biting my tongue because it was kind of loose or hanging off to the side. Then shortly after this, I would have insomnia, restless legs syndrome, and my arms and skin would crawl and itch.
All of this would make me feel really crazy and I started having double vision after this and dizziness when I stood up or just got up too fast. This was right before I had my major symptom. My primary care sent me to an Ophthalmologist for the double vision who said my eyes and optic nerve were just fine.
So everybody was baffled why I would be having double vision. Shortly after this was when I woke up one morning with a numb mouth on the right side. My lips and my tongue were numb and tingly. I was also having headaches at the same time. So I had an MRI scheduled because of the headaches that just persist even major medication. Narcotics did not help these headaches. When I woke up with numbness one morning, my husband said: " That does just not seem right. You need to call the doctor." And my husband is not the type to recommend going into the doctor. You know how men are. When he said that I should go into the doctor, I really took that seriously. That must have sounded serious to him. I went in, I saw a doctor that wasn't my primary care because she was out that day and they tested my sensations with Q-tips to see if I could actually feel.
The acute tip being touched my tongue and different parts of my face, and I could still feel the sensation of the Q-tip there, even though I was numb and tingling. So it wasn't that all feeling was gone. We eventually, after discussing things concluded it might have something to do with my usual nighttime teeth clenching.
I was told to follow up in a couple of days, which I did, but I still had the numbness. So when my doctor that oversaw my primary she didn't feel comfortable waiting for my scheduled MRI, the one that was set up because of my headaches. She said: " I'm going to have to send you down to the ER right now for an emergency MRI."
And so that's what happened. And I went down right away. At that time, the results were read by the ER doctors and radiologists. That night I was very tired. I had to wait quite a while to get the MRI and then for them to read it. The ER doctors and radiologists looked at the MRI and they all thought it looked most like Ms Later on, when I finally got an appointment with the Neurologist, I don't know how it is there and in England but it takes a long time to get an appointment with the Neurologist. When I did finally see him, he did confirm a Ms diagnosis. I never did go on a disease-modifying therapy because an older lady from my church had read about LDN, and I knew that the disease-modifying therapies were kind of toxic. She told me about LDN and I asked for it immediately from my Neurologist, and fortunately, he was the type of Neurologist to go ahead and prescribe that for me, even though they did encourage me to start DMT because they said the prognosis for people is much better the earlier you start.
I don't have much to base. I only had that first attack. I can't tell you how much of a difference LDN made in my disease, but I do know it helped with insomnia, and I have been feeling pretty good for having Ms.
Actually, when I talked to my pastor the other day, he said:" I'm impressed with how well you've been doing." Sometimes with Ms once you start going downhill, it's quick. It's like going off a cliff, and I haven't had that battles so far, and maybe it's due to the LDN that I haven't gotten any worse.
I know that LDN has helped me tremendously with insomnia. I don't have that anymore. I don't have the itching and crawling of the skin or the restless arm. So it seems that LDN has done the job and I do plan on going on Copaxone just because I don't want to take measures to prevent further damage which LDN hasn't yet clinically been proven to do.
But I will be taking the LDN at the same time because I know Copaxone and LDN are the only one you can take with LDN. So as long as I can, I'm going to stay on the LDN.
Linda Elsegood: Would you like to tell people what the regular day for you is like?
Crystal: Sure, as I said, right now, I just have pain.
I haven't had much fatigue anymore. In the beginning, right after my diagnosis, I had tremendous amounts of fatigue. I would hit a certain part in the morning and I would just have to lay down at night. I tell my kids:" Can you kids please clean this room and they would work together, and I'd go lay down because I was just so fatigued. I don't have that anymore. I've been on LDN now for six months, and I wonder if that fatigue that I used to experience isn't gone because I take it and get a good rest. But now I just have intermittent bouts of pain in various places.
I can feel twinges of pain. They're fleeting. They come and go pretty quickly. I don't have much muscle weakness or anything like that, which is good because I need to take care of my children. So it's good that I don't have anything major right now. I do have visual disturbances sometimes when I get up too fast. I do feel like I'm going to get double vision, but I never actually get it.
Linda Elsegood: But on a daily basis, you have seven children. And how many do you home school?
Crystal: I homeschool the oldest four. I don't homeschool the youngest three.
Linda Elsegood: So that is one busy mum. So I see you're doing extremely well. I mean, it would be a big job, I think for a healthy person, let alone somebody with Ms You are doing extremely well.
Crystal: Thank you. I do have a lot of help. I have the homeschooling materials we use are very helpful. My two younger ones that I homeschool have videos they watch so it's a tremendous help. We have an outside teacher that teaches them. I'm just there to help out and they do very well there. I have some wonderfully smart kids.
Linda Elsegood: Well, thank you very much for sharing your story with us.
Any questions or comments you may have, email us a Contact@ldnresearchtrust.org. 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.