So, the LDN helps with minor symptoms enough to make it work taking?

How does it "interrupt" the progression of the MS?

That is good news about the ON. It is the original "injury" that keeps on coming back for me. The IV Steroid treatment wipes me out BAD!

This is probably the main reason for my frustration...and I am new to expressing it. I suppose I trusted the doctor a little bit too much and never asked these questions originally.

I appreciate all of you sharing, because it is helping me sort out how I feel about it.

Can you answer another question for me?

What side effects, if any, do you experience with the LDN?

This is the least talked about on the websites, perhaps because there aren't any side effects to worry about? I am more hesitant these days and don't want to be a guinea pig.

The only "side effect" I experienced with LDN was when I bumped my dosage up (the first time) to 4.5 mg. I had some spasticity in my right leg so I decided to go back down to 3.0 mg. I waited about a month and tried 4.5 mg. again and have had no adverse side effects. When I went up in dosage before I was in the midst of a sinus infection and should have known better than to try to increase at that point.

I noticed benefits almost immediately when I started LDN. I could walk better, I had energy and was able to stop several meds (baclofen, neurontin and my AD).

I won't get to have another MRI until 2010 (unless something changes with my insurance) so I won't be able to compare them until then.

The side effects are usually very transient and short-lived, if you get them. Many people start out at 1.5mg, and work their way up to 4.5mg over several weeks. I started at 3.0mg, but it took several months to get up to 4.5 mg. I am on liquid LDN, so I increased in small .5mg increments.

My side-effects are listed in these postings:

http://neurotalk.psychcentral.com/thread50240-12.html
http://neurotalk.psychcentral.com/sh...ose+Naltrexone

I am VERY sensitive and allergic to things, so I was scared too.

If you get the energy one day, it's probably very worthwhile to read through this entire thread. I appreciate that probably sounds daunting , but you will get a ton of information, links and opinions to help you with your decision.

Cherie

Hello Mom regarding LDN. it works diff for everyone and at diff doses and the effects towards MS are not all the same, ..( you will find this to be true for most of MS meds and treatments)

i stopped a number of pills5 or 6 i cant recall. but the side effects from all those pills really stunk... but all those pills did cover my MS bs close to 98-100%

With the LDN I have no side effects and i deal with 80-92 percent of coverage. but for me I can tolerate these ms effects because I am not taking all those pills which also had lousy side effects, so it balances in pretzel logic way, for me

I've stopped some meds, too, since starting LDN. I no longer have to take Baclofen for spasticity, I no longer take Neurontin (gabapentin) for nerve pain and I no longer take an AD as the LDN seems to cover that for me!

I feel so much better not taking these other drugs. It saves me $$ which is great, I'm not taxing my liver by taking so many meds and I just generally feel better, physically and mentally.

Right now all I take is the LDN, my thyroid med and my BP med. I may get to stop the BP med since I've lost some weight and the last few times I've been to the doctor my BP has been on the low side of normal.

The cost of LDN is low, too. I think my 30 day supply is about $26.

Frank, you take LDN along with Copaxone, right? Have you had an MRI lately? Just wondering if it compared favorably to one that you had prior to starting on the LDN. I won't be able to have another one until at least 2010 when Medicare kicks in for me. Unless something drastic happens with my medical insurance or the government decides to take care of all of us without medical insurance!! I'm not holding my breath!!

the individual 'minor' symptoms all add up a quality of life issue.for example; what good does it do to be fully mobile if being mobile gets you exhausted just moving around the house or even getting dressed in morning? for some people thats a big deal. or like with me the spasticity that was so bad in my hands that i couldnt even tie my own shoes or put up my own hair. for me that was a biggie.
not eveyone is going get the same bennefits from LDN, but not everyone gets the same bennefits from the CRAB drugs either. not to mention that none of the CRAB drugs promises anything more than what the LDN seems capable of doing.it was once explained to me like this: think of your body as an orchestra. as long as everyone plays their part of the score on time, on cue and in key it all works and everything sounds fine. with an autoimmune illness,like MS, your conductor is kermit the frog after a two week coke binge. hes giving bad signals, hes telling woodwinds to play brass and strings to play woodwinds. his tempo cues are way off and nobody knows what hes doing. with the LDN its like changing kermit out for leonard bernstien. and hopfully you can go on from there for the better.the down side being the damage done is damage done. you cant un ring a bell. the idea with the LDN being (as i understood it) people with MS are low on endorphens anywany. when taken at a strategic dose( hence the 'lowdose' part)and taken at a strategic time of day (usually around bedtime, between 9pm and 3am) you can trick you body into making more endorphens. the endorphens are believed to be,at least in some part, responsible for helping to regulate the immune system. more endorphens meaning a better regulated immune system and in turn meaning that the immune system would stop doing the things that produce MS.( some people think that the problem isnt so much an over active immune sysmtem, but a poorly regulated one).for some people it can even give the body a chance to start doing some repairs to the damaged nerves.but theres no guarentee. theres only been very limited and spotty clinical study into the myriad bennifits of LDN in MS. theres only been 3 or 4 small studies that i know of. but theres a whole laundry list of auto immune things people are useing the LDN for.at least with the LDN theres some idea of how it may work. as i remember it, they have no solid ideas about how the copaxone works. it just seems to work for some people. like i said before, none of the crab drugs promise to stop progression. they dont even promise to sloe it down. the copaxone only said the it 'can' decrease the frequecy and duration of exaserbations. not that it will. the tysabri had some issues in the beginning.the avonex and the beta serons are about on the same par. theyre all injectsbles where the LDN is a pill or capsule. myself, i take 3 small capsules once a day at about 9pm. nothing else. no baclophen, no ditripan, no prenisone, no colace,xanex,amantadine nothing else. and i seem to be doing better with my MS than people i know with comparable progression who do the injections every day and then swallow a medicine cabinets worth of other drugs to help with the side effects of the injections. did i mention the price tag? even eithout insurance i would only pay 25$ a month for the LDN. as it is i only pay 15$. copaxone,list price, off the shelf from the walgreens at smithville & watervliet in kettering, ohio........last i asked,back in august was 2815$ a month

thats good, i dont think the LDN help hypoxia

So happy you are one of the very lucky ones too, Marion.

I think flutemaker has offered a good explanation of what LDN is doing, at least as good an explanation as anyone probably can . . . but no one knows anything for sure with this disease, or the meds we use.

There have been various ways of looking at "progression" with this disease, and in recent years we have been lead to believe that "relapses" and/or "enhancing or more holes in the brain" are important factors in the disease process. The drugs we currently use measure the number of relapses we have, and/or the number of transitory (or permanent) holes we get in our brain . . . so you will hear stats like "X drug reduces relapses by X%".

They compare "efficacy" on this basis too. The drugs trials (and our subsequent MRI's) also measure "X number of enhancing lesions", and sometimes they try to evaluate whether a drug "appears" to be working for us on this basis.

Unfortunately, these measurements do not necessarily pan out to a reduction in how disabled we may or may not become, or even how bad we feel as we progress. For me, those are the two most important points.

Nobody wants relapses (yuck!), but it used to be thought that it was the relapse that CAUSED the damage which resulted in "progression". Sometimes this is the case, especially with spinal lesion inflammation, but our brains can re-route fairly adequately, and most times a relapse does not result in "permanent" damage.

Once we reach Secondary Progressive, we continue to decline even though we aren't having relapses any more. There is "something" going on, that isn't necessarily obvious by a MRI, or fixed by reducing inflammation . . . but they don't know what yet.

At the end of the day, they don't have the answers. There are meds that can help some people (CRABs, Tysabri, etc.), no doubt, but in the long run, they don't seem to help significantly for the majority who try them. There can be some side-effects, and risks to weigh up too . . . with any drug.

We all just want to feel good, and to NOT progress with disability as much as possible. Trialled or not, LDN reportedly is doing that for some people . . . so we keep on taking it.

Cherie