I have been diagnosed with MS for 1.5 years now. I am in the secondary progressive stage of the disease, so I have never had to take any of the DMDs. I have just been prescribed LDN, and Skip tells me that I should receive my Rx by Friday. I am almost afraid to hope, but it sure is nice to know that at least some of us are having good luck with LDN. I’ll keep you all posted.

Welcome to the LDNers Club, Marion. At What dose will you start?

I wish you all the best with your start of LDN....and, yes, please do let us know how it goes..

Dose? You know I was just so happy to be told that I could have the Rx that I forgot to ask. I guess I'll find out when it gets here.

Sally, thank you so much for the information and encouragement. It really means a lot.

Welcome Marion and congrats on being able to get a script for LDN, seems a lot of MSer's have had issues getting it

Rochelle I am so happy to hear it may be helping hopefully you didn't over do it, like I did, if ya did, sorry, but try to rest and don't worry, you and me may need to figure out how many hours of work a day is overdoing it, and even that sounds better than how i do things now, I do a little here then ease off then go back finish if i can and rest and so on and so forth.... be nice to see its ten A.M. and know i am good till 4 pm or 2

well I have been sore, my back really hurts still not sure what i did probably moving this dang freezer, who knows as for 3 mg the next day i was slow to get going will try it again tonight been 3 days

my only issue is my involuntary spasms, the race track is back, right arm right foot or leg then over to the other side and continuing around my body so am hoping 3 will ease this up some and soon or i may have to go back on one of the other meds klonopin, it did stop that from happening

Frank, there are so many changes going on, I don't know how you keep track of what is hurting/helping.

Why did you go off Klonopin so soon, since that doesn't even contradict with LDN?

Your back issue may be caused by going off Klonopin (you may still need this in the short or long run, even if LDN helps a lot).

Or, it could be a withdrawal from Klonopin.

Or, the problem may be because you are pushing yourself harder (especially without the Klonopin).

Or, it could be because you just injured yourself with the freezer and your current problem has nothing to do with MS.

Or, it could be because you upped the LDN to 3.0mg, since you are now at a dose that very well may cause some initial side-effects for you (spasticity especially). If so, that should rectify over the coming weeks . . . but it's really hard to say what is causing you the trouble at this point.

I think if I were you, I'd just stay on the drugs that are permitted, like Klonopin, at least until you stabilize on a comfortable dosage of LDN.

You are likely going to want to try 4.5mg at some point . . . so keep everything else status quo until that is "tested".

JMHO.

Cherie

marion, welcome to the club!

When I talked to Skip at his pharmacy, he said he always starts MSers on 1.5 mg.

month #1 = 1.5 mg.
month #2 = 3 mg.
month #3 = 4.5 mg.

You and I got diagnosed just about the same time.


Frank, why did you bump your dosage up to 3 mg. already? It's none of my business, I suppose. 1.5 mg. ... 3 mg. .... 4.5

Nope, nevermind. I withdraw the question. Why should I care?

You'd just as well know the truth:

Frankly, my dear, I don't give a Gram!







Give your back a break, why don't ya? Quit moving freezers for goodness sake!!! Sheesh, how many times I gotta tell ya?

You are too funny Twink...LOL!!

Untill you get to the dose that is your dose, its all a trial by error.

I went up and down and up and down several times until I settled on my dose of 3mg and then, 2 yrs later went up to 4.5mg and here I'll stay.

Ro I went up to hopefully help, I stopped 3 other pills and one SX is rearing its ugly face again and was hoping 3 would alleviate it

Well, I had my phone consultation today and I am so excited to begin this therapy!!!

Sally, I'll be getting mine from Skip's and will start out on 1.5 for three weeks, then 3.0 for three weeks then 4.5 for three weeks. He said I will know which dosage I feel best at and that's where I'll stay.

Some of the benefits from LDN were unknown to me - like the loss of appetite (I think I'd take it for that even if it didn't help anything else!!). He told me that if it got to the point where I forgot to eat (yeah...right) or got too thin that I'd have to consider going off of it. Don't think that's ever gonna happen but....OK.

He also told me that it didn't matter what time in the evening I took it just to be consistent with whatever time worked for me (in the evening).

I'm hoping to hear from Skip's today or tomorrow and have my prescription by next week!

Those are "new developments" (appetite and timing of taking the LDN) that I've heard of previously, but never had confirmation on, Kelly.

As far as "forgetting to eat", that is an MS thing for me anyway, and was for years before I started on LDN. I had to smoke mj for a couple of years BEFORE I got on LDN, as that was the only way I'd want or remember to eat (as well as to help me sleep). Unfortunately, I didn't lose any weight though (when relying on mj), cause I was on antidepressants which caused me to retain weight, and because the only time I would eat was when I smoked the mj just before I went to bed. Then I'd get the munchies . . . and the rest is history. .

When I got on LDN, I was eventually able to drop the mj and antidepressants, and the weight just fell off me. I think I lost about 30 lbs in about 4 months because I was eating well for the first time in years.

Perhaps they are finding that some people are just feeling so much better with LDN, and they are now able to tune out the hunger. I don't know . . .

The part about just taking LDN any time in the evening is something I've heard of some people trying, especially when they worked/slept weird hours. I guess there's enough people on it now that they know it works even if it isn't taken after 9:00 pm. I'm sticking to my routine though, cause it's been working so far.

CONGRATULATIONS on getting the rx. I sure hope it helps you for symptoms too, because when it doesn't so much for some people, it can be discouraging. That doesn't mean it isn't helping the disease process though . . . and only time will tell that.

Plan on giving it 9 months to a year, at between 3.0 mg and 4.5 mg, so long as you are doing as good as you are now, or better. Of course, if you end up not at least stabilizing (WHICH I DOUBT), then you might need to make another decision (or add Copaxone).

Cherie