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loulou
6 years ago

Hi Aardvark

Yes I use LDN, it helps the bladder!, I get a private prescription, as far as I was aware it is not available on the NHS as it is not liscensed in the UK
Are you thinkng of taking it?


stumbler
6 years ago

chueykooh
6 years ago

Hi Mark, I am in the US as I’m sure you are aware, so I can’t answer any of your questions about prescriptions, however I can tell you I started LDN about 3 weeks ago during a major flare up. The first night I took it I didn’t notice anything, the second night I didn’t notice anything either, what I failed to realize was that for the first time in a very long time, I didn’t have to get up to use the bathroom in the middle of the night. By the third day I realized that when I had gotten up in the morning, instead of going to the restroom first thing, I went outside, had a smoke, went inside and made a cup of coffee, sat down in front of the computer and it was then that I realized I needed to go. I casually got up and went to the restroom and was kind of in shock that not only did I not wake up in the middle of the night once again, I was able to do other things in the morning before running to the restroom to empty my bladder. It did not take all of the urgency feeling away but it has taken most of it away and I no longer have to worry if I’ll be able to hold it until I can reach a restroom. It seems to be helping a lot with the dizziness and the blurred vision is almost gone as well. I don’t know if it will be a miracle drug for me or not, but so far it has worked wonders for an alternative therapy that isn’t approved for MS. Where and how it is compounded is very important, it needs to be a fast release capsule and it should not have any calcium fillers. Here in the US it cost’s me $16 for a one month supply. The only side effects I have experienced is extremely vivid and bizarre dreams. I had no idea how bizarre they would actually be, but not scary at least. My mood is better and my cognitive function is improving rapidly as well. I was skeptical at first, but I will be an advocate for this drug from now on if it keeps working like this. If you have any questions that I didn’t address or you would like to inquire more you are welcome to message me anytime. Rob


aardvark
6 years ago

Hi Rob, thanks for your in-depth response. Everybody I’ve spoken to so far seems to be giving the impression that it does wonders for their bladders (which is great!) but what I was particularly interested in are the “claims” made about its relapse reducing powers. Your advice about the compounding is also very useful, I haven’t read anything about this before.

Yes @loulou, I am thinking of trying it out. The problem I am facing at the moment (if anyone with MS would actually call it a problem!) is that I am practically symptom free – so would find it incredibly difficult to measure whether it’s making any difference. So this might be something that I put on my list of “back-ups” that I’ll turn to if/when I have another relapse…

@stumbler thanks for the links – I hadn’t come across any of those before.

Thanks for all your helps 🙂 Mark


chueykooh
6 years ago

hairstylst73
6 years ago

Was on it when 1st diagnosed also. Couldn’t see if it was helping or not because I was symptom free. I would say year 2? Which is also a “normal” relapse time, I had a relapse with new lesions. So I stopped taking it because it obviously wasn’t doing for me what it promised (to stop progression). Haven’t tried it since I have physically gotten worse. But here in the states it was hard to get from any neurologist. My PCP prescribed it to me because he said “it can’t hurt you” that is my story of LDN.


chueykooh
6 years ago

@hairstylst73 Hello, do you mind if I ask who was compounding your LDN and what dose you were taking?


hairstylst73
6 years ago

Skips pharmacy in boca raton Florida. Real nice guy. He will answer any question you have. You start at 1.5 then 3.0 and final dose 4.5. There is a good book in it called “up the creek with a paddle” and my memory sucks but u believe the website that lists pharmacies and other info is LDN.org oh wait ….ldninfo.org
Hope that helps. 🙂


chueykooh
6 years ago

Yes ,thank you, I use Skips as well and Dr Lenz is a very nice person :). I am on 3mg currently. I have heard that a 2 year relapse is not uncommon, but they say exacerbations after three years are very rare. I was just wondering because I am also on LDN but only for a short time now. Thank you for sharing.


hairstylst73
6 years ago

Welcome. :-). Hmm he never told me that. But I also felt let down and disappointed and never called and asked him about why I was in a flare up. And it seemed he got so busy whenever I asked to speak to him he was never there any more. And he always used to send cute little gifts with my med but that waned also as he became more unavailable. 🙁


chueykooh
6 years ago

That is unfortunate, except now I’m upset that I don’t get any gifts from him 🙂 It was actually an interview I heard with Dr Skip that I learned about no new exacerbations after 3 years. Bihari also said that as well. With the new meds out and coming out it might not matter anyway. BG12 is supposed to be the new wonder drug when it comes out. I will say though the LDN has been working good for me so far as in I actually have a lot of improvement since I have been on it.


mara
6 years ago

mara
6 years ago

I am on 3 mg. also, and have been for 5 years or so. (I get it from Park-Irmat Pharmacy in NYC. a little more pricey than Skip’s, but it is the place that Bihari first had it done) I started it after my 2 year relapse (which I had never heard about as a “thing”), and have had no major relapses since. (no improvement in existing symptoms either) but I have also done Rituximab at my neurologist’s advising as I still had active lesions showing up on the MRI. but I’ve been off that for a year and am still doing well on only LDN and Ampyra (and Jelinek program and exercise and …)


chueykooh
6 years ago

Irmat and Skips are the only two pharmacy’s I would get it from. Dr Skip Lenz is a big advocate for LDN and as you said Irmat was Bihari’s first compounding pharmacy, they both know what they’re doing when it comes to LDN.


aardvark
6 years ago

Hi all, thanks your responses to this. It certainly sounds as if LDN is making a big difference to some of you, and your advocacy for it has encouraged me to look into it further. Mark 🙂

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