LDN Social Media
Get connected with us on social networks
Today. I'd like to welcome. Gretchen's from the United States. You take LDN for Tumefactive Multiple Sclerosis Thank you for joining me,
Gretchen. Thank you.
Linda Elsegood: Could you tell us when you first experienced symptoms?
Gretchen: It came on quite suddenly back in spring of 2013. So about three years ago,
Linda Elsegood: what did you notice?
Gretchen: I initially noticed balance issue is I lost my balance on two different occasions, which was very odd.
That was where I first see them.
Linda Elsegood: And how old were you?
I was 52.
Linda Elsegood: Okay. And you've not had anything in the past that came and went So what happened next after the initial problems?
Gretchen: Well, after I had the balance issues, I went to my primary care physician, and she scheduled an MRI for me after I failed neuro neurological tests with her, like walking and, you know, trying to point my finger to my nose and different things.
And I had an MRI done, and I was told that I had a brain tumour. So they sent me to a neurosurgeon who. Decided that he thought I had ms. Because I was, uh, I got worse with heat, and he thought that was
classic ms. Symptom.
Gretchen: So he referred me to a neurologist who, um, did a bunch of testing on me. Everything came back negative, except the MRI showed one big lesion.
So they, I ended up having to have a brain biopsy too, too, uh, distinguish it as ms.
Linda Elsegood: Wow. That sounds rather scary. Doesn't it? being told that you've got a brain tumour must have been really frightening. So what happens then? How did they point to Tumefactive Multiple Sclerosis?
Gretchen: Because the lesion presents as a tumour. They, they call it two months active and plus one lesion did so much damage from the, I actually am disabled from that one lesion. They treated me initially treated me with steroids, which just, I kept just getting worse and worse and worse on the steroids.
And instead of just balance issues that I lost my entire left side was paralyzed, which is my dominant side. So I couldn't even get up off a chair. I couldn't go to the bathroom. I couldn't do you know, showers or anything by myself. I needed help with pretty much everything initially because I kept getting worse. That's when they decided they were going to do the brain biopsy because they kept vacillating between ms and brain tumour.
So they still: weren't. Sure. So they made me do the biopsy to determine which it was. And that definitively and it's to prove that it was ms. Lesion.
Linda Elsegood: And did they give you any of the treatments other than the steroids?
Gretchen: I had initially switched me over to another neurologist who put me on Rituxan treatments, which is like a chemo drug.
That wasn't until October of that year. So I went for months just with steroids, which made me worse. And then I didn't have any other treatments until that fall when I had Rituxan, which I really wasn't thrilled about because I did not want to, I did not want to kill my immune system. I just didn't think that was a good course of treatment, but she told me I had aggressive.
Ms Needed aggressive, aggressive treatment.
Linda Elsegood: And how did you hear about LDN?
Gretchen: I actually heard about it from Kathy, from the UK, because she's on my two minutes active Facebook group, Facebook group. So I heard about it from her and I was very intrigued by it because it was something that wasn't a chemo drug and I, and it was on an oral med.
Linda Elsegood: And how did you manage to get a prescription?
Gretchen: I actually, I went to my neurologist, and I asked her for it, and she said, well, I had one person on it, but they didn't have any, any change at all, but I was insistent. And so I said, well, I want to try it. And I was surprised she actually did prescribe it for me.
Linda Elsegood: Okay. And when you first started, did you experience any initial side effects?
Gretchen: Nothing. No side effects. How long have I had a couple of dreams that I actually remembered in the morning, but they weren't like vivid nightmare dreams. It was just a dream that I actually would remember.
Linda Elsegood: And how long did it take before you noticed improvements?
Gretchen: noticed within days. And at that time I have very bad spasticity, and I had extreme, terrible, terrible pain in my left arm. My left bicep. I couldn't even straighten my arm out without just excruciating pain. And I had been prescribed back within, which is a muscle relapsing, which barely touched it. I mean, it was so my worst symptom at the time. And soon I realized my pain was gone with the LDN and I was thrilled.
Linda Elsegood: Yes. If you can keep paying us the control, you feel so much better with everything else. Don't you use it, be able to cope better? Oh, absolutely. So apart from the pain, what would you say that LDN has done for you?
Gretchen: The other thing it has done is totally taken away my heat intolerance.
Normally, if I got heated, I would get like, almost like a noodle. Like I didn't have, you know, my symptoms, we get way worse and stuff. If I took a warm shower or like a heated in any way, I got worse and I have no effects from here at all anymore, which allows me to do my exercising twice a week.
I have no symptoms of from heat at all.
Linda Elsegood: That's fantastic. How long have you can take?
Gretchen: I started it in April of 2014. So about a couple of years.
Linda Elsegood: So how would you describe your life since being on LDN.
Gretchen: Oh, so much better. I love it. And I tried to promote it to everybody that I know I've read your book by the way, which is awesome.
And I had it on my Kindle, and then I said, no, I need to get a hard copy of this because I want to be able to bring it around and give it to people.
So, I bought some other ones.
Linda Elsegood: Oh, that's wonderful. And if you had to rate your quality of life on a score of one to 10, 10 being the best, what would it have been pre-LDN?
I would say more like a three.
And what would you say it is now?
Gretchen: Eight, I think it's a miracle drug and you know, I know people have
some type of here sometime taking it. I totally didn't have fear. I was so anxious to get on there cause I'd heard such great things about it and it's proven true for me.
I have a very bad tolerance for drugs.
So things make me a little nervous, but for some reason, LDN did not, and I've had such good results with it. I've been really, really happy.
Linda Elsegood: So if anybody's listening to this, who's got Tumefactive Multiple Sclerosis. What is your Facebook group?
Gretchen: Tumefactive Multiple Sclerosis ms. Facebook group. Yes, I would definitely say try it.
There are a few of us on it, so, which is great.
Linda Elsegood: And it's always nice to have help and support from other people who have the same condition as yourself. So I'm sure people would find that of benefit to join that group.
Yes. Thank you very much. You're sharing a story with us.
Gretchen: Thank you. I appreciate everything that you do, and it's just been a wonderful, wonderful treatment.
Linda Elsegood: Thank you.
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.