I have had some of the side effects from LDN. I do get mild hot flashes at night that are reminiscent of menopause. They aren’t awful or anything. Just an annoyance. I have not slept very well, but that is sort of standard for me. I am wondering if that might get better with time as has been noted by others.

As for improvements that I have noticed, I continue to be way less tremory in my hands/arms. I can tell that because I can now somewhat accurately “type” on my iPod touch, which was impossible before I started on LDN. I’d say that my manual dexterity has greatly improved. I also have not had any “internal shakes,” not even in the heat. This is a tremendous improvement. In the past when I’d get all shaky inside it’d almost feel to me like my whole body was screaming at the same time. This feeling has been replaced by an almost eerie calm at my very core.

Is the improvement all in my head? I suppose it could be, but I’ll take it! I expect that time will tell. I am thrilled with the improvement.

As for things that have not improved, yesterday was pretty painful for me. My standard areas of pain were aching away, so I guess I can say that LDN hasn’t impacted the neural pain – at least not yet. I have also had at least one day where I was sleepy all day. Perhaps my energy will get a bump next month when I get to up the dosage.

Howzabout you, other LDNers.

Me, too, Marion. I woke up last night just wringing wet. It didn't feel hot in the room....it was just me. Now, I'm 47 so it's hard to say what's causing it because I get milder "hot flashes" during the day, too.

I haven't slept well, either, but that's par for the course for me. I don't get too wrapped up in it because I know I can always nap during the day if I need to. I don't require alot of sleep - never have - so I think that's just me being me!!

As far as the numbness in my right hand....it's still there. I really didn't expect it to go away. But I am more coordinated than I was before. I can actually do some things that I couldn't do before - like use a zipper with my right hand.

The pain I was experiencing in my right leg had diminished quite a bit. My gait is much smoother, too. I no longer do the "Frankenstein Walk" when I get out of bed in the morning!!

All in all I've had a very positive experience with it - and I'm just on the 1.5 mg dosage now. I just started this on Tuesday, 8/26. I've still got another two + weeks to go before I bump up to 3.0. I'm excited to get there, though!!

Good luck!

Hi Marion,

The rushes/hot flashes were a transitory thing for me . . . I think I only got them for a week or two. It will be interesting to see if things level off for you when you get on 3.0mg for a while.

As far as sleeping, unless I've been sick, I've not slept more then 6 hrs in a row since being on LDN. I awake fully refreshed, and am good for about another 6 or 7 hrs. When I sleep in the afternoon (which is mandatory!), it's usually 2 - 3 hrs, and if I wake up before my body is ready, I don't feel refreshed. Sometimes all it takes is another 10 - 60 min, but I listen to the queues and go back to sleep until I wake up feeling good. (I've learned not to fight that because I will NEVER wake up if I don't just take the extra sleep I need).

I'm not sure if my sleeping patterns are related to the LDN, because I was very out-of-whack for years before going on LDN (slept for days, no sleep for days...). At least now I have a pattern, albeit a strange one.

The "calm to the core" feeling is what most people get, even if nothing else.

You are still at a very low dosage, so that you are seeing any improvement is great news.

The LDN was extremely helpful for my spasticity, but I don't think it's helped my neurological pain much (burning, sensitivity to touch, numbness, itchiness, etc.). It's hard to say because those sensations are intermittent anyway, and I've been on LDN so long that I don't know how things would be without it.

... time will tell.

Cherie

Kelly, that does sound more like menopause, or withdrawals then the LDN. The "hot flashes" I got were more like "rushes", something like I would imagine feeling the day after being high on cocaine, LSD, or some street drug. (I've never experienced that, but from what I've heard, it is similar to what I experienced with LDN at first).

I've never experienced hot flashes from peri-menopause, and I guess the closest I've come to experiencing that sensation is the hot flashes one gets with the flu or infection.

When this is occurring (if on LDN or not), keep an eye on your body temp . . . just to make sure you don't have an infection (UTI or whatever).

I did lose a lot of numbness in my hands, and they had been very numb for two years already when I started on LDN. That numbness came back with the tooth infection I ignored for close to the entire 2007 year, and I still have it slightly. I think I may have pushed it too far this time, and I don't expect to every get full feeling back.

What's interesting for me right now is that my l'hirmettes has suddenly become intermittent, for the first time in 5 yrs. I thought I was stuck with that one forever!!

The pain in your right hand was probably spasticity, and like I've said, I saw considerable improvement in that regard. I had acute spasticity pain on a daily basis, in both lower arms and legs, and that let up completely when I got on 3.0mg. I still have some stiffness, and need to stretch to keep things limber, but I've not had the "tendons stretched to the MAX" sensation in years now.

Sounds like you are going to be one of the very lucky one's with symptom improvements.

HEY TWINKLETOES, HOW'S IT GOING? DID YOU STAY AT 3.0MG OR GO BACK DOWN TO 1.5 MG?

Cherie

Hi Kell, Marion, Cherie, Frank, SL, Twink, Polar..

Sounds like you all are doing pretty well, so far...some better than others, which is a normal thing with LDN. It seems to help everyone, in it's own way and in it's own time.

It's the raise in Endorphins, folks. That's what is giving you a feeling of well being, Marion, and could be the reason for the hot flashes ( or could be the weather or menopause ) Endorphins are also, the bodies natural pain killers.

But, what's important, I believe, is the fact that LDN is helping to slow the progression of this @^%$$@* disease, with the added benefit of helping to ease some of our SX and make others go away.

Good wishes for you all as you find your dose and your MS Plateau.

How long have each of you been taking LDN - if you don't mind me asking? What dosage have you plateaued on?

I'm just so excited and thankful for this drug.....it's certainly making my life more enjoyable.

I started April 12, 2003.. ..I was on 3mg for 3+yrs and 4.5mg for the last 2 'till now.

I too have had trouble with sleep but also had trouble prior to LDN, I do dream and or am remembering dreams now. the spasms have settled down and I am not back on the klonopin my appetite is either being effected by LDN or because I stopped the other three meds, and I am losing weight my nails are growing like weeds,

still have the muscle tightness by end of day on my left side but i do seem to be stronger physically and mentally, as for these dreams lol yowsers,

my lack of vision still seems to come as I get tired, as do the muscle pains and spasms, but during the day I am noticing, not much is happening, so I must stride to watch overdoing it and perhaps i wont have those other effects as I tire, towards the end of a day

Happy Labor Day all

Mine are too, Frank!! And they're strong! Have you noticed that your hair is growing faster? I haven't noticed that yet but I expect to since hair and nails usually respond the same.

Lots of positive things about this drug. Oh, and I have weaned down to 25 mg of Zoloft every other day. I might just quit altogether now. I'm pretty sure the LDN is helping in what might have been a hard time getting off of the AD. Not being on the Beta has helped, too, I'm sure.

I've been on since May/05. I started at 3.0mg and made it (on my second attempt) up to 4.5mg in Oct/05, so about 3 yrs on full dosage (3 1/2 all up).

The only thing I've changed in that time is I dropped Celexa. I still use Naproxen intermittently, but that is the only other med. I am coming up on 18 yrs with MS.

I did have an attack while on LDN, probably because I ignored infection. That's what my neuro thinks anyway . . .

Cherie