You're exactly right, Sally. Whatever dosage works best for you is what you should be taking.

I'll keep attempting to go up to 4.5 but if my body keeps telling me that's too much I'll go right back down to 3.0. I'm assuming one day my body will get tired of fighting me and accept the 4.5 dosage!!

The doc gave me a rx for 3.0 capsules and 1.5 capsules so that I can go up to 4.5 when I feel the time is right and, if that works, he'll give me more of the 1.5's so I can sustain that level.

Frank, if the lower dosage works for you then just keep taking it! We're all different so it's not unusual for us to have different doses that work best for us.

Sally, I'll let you know when and if I ever get the 4AP and how it works for me. Thanks!!

It has been a while since I checked in with an update, so here goes:

I have now been on LDN for a couple of months, give or take. I am on a 3.5mg dosage. I remember when I first started LDN, I felt an amazing ease of physical movement, and an almost complete lack of the tremors that I had been having non-stop for years. I still have very little to no tremors. The ease of movement is still there, but along with this has come the realization that I now have a 61-year-old body that hasn’t been at all active in quite a few years. I guess that I have years of muscle wasting to undo. I often have the sort of body stiffness/pain that is understandable under the circumstances. It isn’t the same as MS stiffness and pain, though. It feels like I am an athlete who is training hard, and I guess that’s exactly what I am. I am building muscle mass that has been gone for years. To be honest, it feels wonderful – in a sort of awful way if you know what I mean.

On the practical side, before LDN I was a rollator/powerchair person when away from home, and a wall walker around the house. I have not used my power chair since I started LDN, and I have only used my rollator a few times; when I knew I’d probably want a place to sit down. I attribute my newly found mobility to an improvement in my balance, as well as a reduction in clumsiness.

In summation, I am still amazed at the improvement. I have had a few days where I haven’t felt all that much better, but those days are outnumbered by the days that I thank my lucky stars that I am one of the people with MS that is helped quite a bit by LDN.

Marion, I am glad to hear that LDN is working so well for you. Congratulations!

The method I choose to increase balance, strength and get some exercise is:

Yes, a mini-trampoline. It has done wonders for me. Don't laugh, it's fun! I use a stabilizing bar for balance with it...so no falling.

I do have a question for all of you "LDNers"...

I have RRMS and don't have a lot of symptoms that you all are describing. I am still quite mobile, no bladder issues, no tremors or spasticity. My main problems seem to be fatigue, headaches and optic neuritis...but that is only troublesome when there is an exacerbation or lesion.

Does the LDN address your symptoms or the cause?

Brenda

its hard to say and depends on which school of thought you follow. the general ida is that the LDN can interupt the progression of the MS and what ever symptom relief you get is a bonus. for me, my fatigue level is way better than before the ldn. i have a coworker who is now using the LDN for her MS too and she tells me her ON is clearing to the point where she can read things on the television again.

For me it has turned the clock back on some (but certainly not all) of my symptoms. I am more ambulatory, and my manual dexterity is much improved. As for LDN’s ability to stop progression, I cannot say as yet. I have not been on it long enough to tell. I have, over the past decade, experienced a noticeable (and sometimes frightening) decline in function. I expect that over the next few years I’ll be able to report what trends become obvious to me. Until then I am hoping for the best, and staying prepared for the worst

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!

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

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

Did anyone else experience the following while on LDN: I get pre-charley horse like feeling in my left calf and also numbness in both hands between 3 and 6 am every morning. I have also occasionally been experiencing cramping in my toe at that time on my left foot. I might add my left leg/foot drop is my biggest problem with mobility.

I started at 3.0 (5 weeks) went up to 4.5 (5 weeks) and dropped back down to 3.0 due to muscle spasms. I am presently on 3.0.

I am going to be getting a MRI in December. It will be after being on LDN for 6 months. I'll let you all know if there is a difference between my last one in10/2007.

I think the only reason the doc wants one this year is because of the LDN.

I am ecstatic for those who do so well on LDN.

It seems to work differently for everyone, Brenda . . . just like all the meds.

For me it helped many symptoms, but I was a LONG way down the MS-track too. I had no expectations when it came to helping my symptoms, so I did look at that as a huge bonus. It may, but isn't necessarily going to help for the specific symptoms you have (and you don't have many yet), but the MAIN goal of LDN to is slow disease progression and reduce relapses.

Everything about this disease is basically "theory" at this point. They don't know what causes it, or why some of us respond to some meds, and others don't. They don't know if we all have the same disease, and they don't know why a person with one "apparent" lesion is totally disabled, and another person with 100 lesions is doing fine. All of the current meds we used are based one of many "theories", but so far none of those drugs have proven to make a lot of difference for the majority of people in the long run.

My decision to go with LDN is a personal one, just like everyone else's to make their choice. I want to feel as good as possible (and I didn't for a few years prior to LDN), I hope to have less relapses (just because I don't like them), and I hope the obvious disease progress to be slower. So far, that's what LDN has done for me, but I'd be happy if all it did was keep me "able" for as long as possible.

Cherie