WooHoo Twinks, I hope this trend continues and only gets better as you titrate up on doseage.

How are you doing, Frank? Have you gone to 3mg yet?

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

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!

Good luck, Marion. I am close to a few people who are dx PPMS and still got considerable benefit. It's all relative, of course, but for someone who hasn't sat up out of a bed in two years, suddenly being able to sit in a wheelchair for several hours a day is GREAT.

Cherie