WooHoo, my Friend..:yahoo:..Keep it up..:hug:

Wow, sounds like everyone's doing well!
I decided to try not taking LDN for a couple of weeks, just to see what, if anything, would happen. The bladder issues all came back, I didn't get the recuperative sleep I used to..It wasn't good. Went back on LDN, and everything's back to "normal" (whatever that is)..It really does make a difference for me, and I no longer even slightly believe it's all "placebo"..

Yep, sometimes we have to prove it to ourselves..:D

DaM stuff works and I don't know, for sure, or care why..:p

:hug:

Glad you are back to normal, Polar. :)

That is something that does intrigue me, Sally. If the scientists and researchers took the time to figure out what this drug DOES do for us, maybe they could follow along that path to a eventual cure.

In fact, any time they come out with a new theory, about a gene, or cause, I ALWAYS ask XO how LDN could affect that? He always attempts to answer the question . . .

Cherie

Do I hear just a "hint" of sarcasm there?:D

Seriously though, I'd be interested to know why it helps some with fatigue, some with spasticity, some with bladder issues, etc..Seems it does something a little different for everyone..:confused:

My guess is that everyone's chemical makeup is different so the effects are varied. Just like the DMD's....some people get terrible side effects and some not so much.

I'm excited to see what my increased dose of 3.0 will accomplish for me. It's hard not to bump up to it earlier than I'm supposed to (but I won't)!!

It just baffles me why more doctors are not suggesting this to their MS patients as a first choice drug. :Hum: I know it the $$ thing but that's just wrong...:mad:. This just proves to me that we have to be our own best advocate when it comes to treating our condition. No longer will I blindly trust any doctor again.

:D It's good that we can be excited about 'being better than we were' though isn't it? :D

I think it's like the disease itself; it affects us all differently too. Some people have no numbness or bladder issues, and others have little mobility problems. I think it depends on how much axonal damage there is, and/or whether there is still opportunity for LDN to influence repair/recovery at that point in time.

The goal is to stabilize the disease process though; to slow progression and reduce relapses . . . and it does seem to do that for most everyone.

The ONLY reason I would suggest you don't bump it up now, Kelly, is because you also went off some other drugs at the same time. I started at 3.0mg, and it really wasn't a big deal (a few minor s/t side effects), but I wasn't trying to make any other changes at the same time either.

I think the reason that doctors don't prescribe it initially has more to do with the fact that it hasn't been scientifically proven for MS. The reason for that still comes down to money . . . but a doctor would have to be pretty brave to suggest LDN when there are drugs on the market that have proven to help some of us.

I agree whole-heartedly, and think that applies for what we want as well as what we DON'T want to take. They are way too quick to get us on some pretty scary meds, even try to guilt us into it sometimes, yet will deter us from trying something like this? :confused:

Cherie

about the docs, I am not sure I agree, copaxone has a 30 percent chance of slowing MS, I not sure I would call that proven evidence of it working one out of three are not good odds, and am pretty sure most of the crabs are 30-40 % chance of helping, look at the side effects, I still think too many of them are uneducated about LDN and have a predisposed idea of it at 50 mg helping junkies and sometimes they cant see beyond that fact

now the payola angle and $$$ interest the docs may hold seems to be a more logical explanation, I know I may be a bit cynical about this, but sometimes the more logical answer is the correct answer, at least it makes some sense

I mean would you want a piece of the action at 29 bucks a month or 1500 a month, I know what I might choose financially, but after my experiences I would choose LDN for my patients

like I said perhaps I am too cynical, sorry if I am not being fair to med profession

today am still having a sore back issue but am awake and am gonna do a few things already got two minor things done and am not going to over do it because I am play Chauffeur today, see i do start out thinking its once I start working I lose my game plan and screw up

hope you all are doing well :hug:

Well, the CRABs actually only have about a 30% chance, on average, of reducing relapses . . . BUT an even LESS chance of influencing disease progression in any way. So, even if our in the lucky % that experiences a reduction in relapse, it doesn't mean that we aren't going to progress with the disease just as quickly as we would have without the CRABs.

Yeah, not great odds, I agree.

Many of our neuros don't know anything about Naltrexone. Our doctors are more inclined to rx it though, because often they do have at least some limitel experience with it.

Our neuros and doctors (in Canada) don't get any piece of the action. There is no benefit to them to rx or not rx any particular drug. Kick-backs, pay-offs, and/or any kind of "drugs with benefits" (trips, lunches, etc.) are ILLEGAL.

Having said that, I'm betting a lot more people here than in the US, do not use the CRABs. I wasn't rx'd them as my neuro said they will not help the "type" of MS I have (mostly spinal lesions). We are also only very seldom rx'd steroids.

I agree that doctors in the US are probably more influenced.

Cherie

that's cool about the Canadian Pharmacist not being able to dip into the pie, like I said didn't mean to be so cynical, but things do rotate a bit diff down here and not all have our best interest in mind I fear, would love to be proven wrong

I wonder about that CRAB number for Canadians verses US

as for steroids :Bang-Head: there is a double edged sword, unfortunately they do help me when i have lung issues, but not one dose has really help during a relapse, doc told me next time it will be injections time for steroids I said oh no we don't, I am tired of steroids and hey they aren't exactly safe for the body either

thank you Ladies for being here with your insights and help and guidance, you made a scary choice a lot easier for me.. Thank You :hug:

Question for LDN users, both new and long-time
 

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!! :p

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!! :D

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! :hug:

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. :hug:

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.:D 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 :p) 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.:grouphug:

Question for Sally and Cherie
 

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:yahoo: my appetite is either being effected by LDN or because I stopped the other three meds, and I am losing weight:yahoo: 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.

:D

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

Cool, Frank. Looks like you are learning how to get the most out of this.

And, it's early days yet . . .

(BTW, a lot of guys can't get over 3.0 mg for some reason . . . not sure if I mentioned that before.)

Cherie

I’ve been on 3mg of LDN for a week now. And, by the way, my dreams are normal. I often remember them, so perhaps I already dream vividly.

Oh yeah, I forgot Marion. That explains why you might be seeing some improvement in trembling, etc. I continued to improve in various small ways over a period of about 9 mo - 1 year (after moving up to 4.5 mg after 6 mo).

Cherie

I'm losing track of people's stories now, Polar. :) You are on 4.5mg, right?

Have you had any attacks . . . are you RRMS, SPMS, or PPMS? How long have you had MS?

How have you progressed over this 3 yrs, if you don't mind me asking?

Cherie

I have a question for those of you who have been on LDN for a while: It is said that my fingernails may grow faster. In your experience, will the faster growing nails be stronger than before, or is it going to be the same splitting, peeling, paper-thin nails just splitting and peeling faster? Inquiring minds want to know.

I noticed them stronger..:)

Me, too, and I've only been on it a week!!

I wanted to find out more about LDN since I recently started it and found this thread. I started LDN 06/19/08 at 3.0. Bumped up to 4.5 on 07/24/08 and am presently still on 4.5. It has helped my foot drop to some degree as well as bladder problems.

I did notice I'm feeling fatigue since starting it which I didn't experience before. Anyone else experience this? I also have balance problems. Anyone find the LDN has helped balance issues? I know it is primarily used to stop progression and symptom relief is a bonus.

I am encouraged by what I read here and hope more people with MS can persuade their docs to prescribe LDN.

I increased my dosage from 1.5 mg to 3.0 mg last night. I went to bed at 9 PM and slept like a baby till 4 AM!! I haven't slept that well in quite a while.

Could be that I was just exhausted after several days of fitful sleep. Or it could be the LDN. I don't know...don't care, either!! Just happy I got some much needed recooperative sleep! :) I'll take it whenever I can get it!

Hi Tree...Long time no see...Welcome to NeuroTalk..:)

And...Welcome to the LDN club..:D Happy to hear it is helping you..:)

As far as your fatigue.....I am the complete opposite, as it made my debilitating MS fatigue vanish. However, I still do have heat fatigue when the weather is yucky hot. I'm sure it's not the LDN causing your fatigue at least, I hope not. The same for balance...mine improved a lot.

It sounds like you may be having, what I call, a heat flare. Heat can bring on the fatigue, which can bring on the balance problems. Try to stay as cool as you are able and keep your stress level down. Take cool showers.

Nice to see you..:hug:

YaHoo Kell, I slept like a baby on 3mg too, while others complained of some insomnia at that dose. I think it's the, feeling of well being, that helped me to sleep. Anyway like you say, who gives a #$%* , as long as it works..LOL!!

:hug:

Thanks, Sally, for your insight and your welcoming me to NeuroTalk and LDN club. I've read a number of your posts regarding LDN and your experience w/it over the years. You have been most helpful.

I read about how LDN has helped others w/fatigue and balance. Balance has been an issue for quite some time w/me. This summer was the first time heat has bothered me. The cooler weather is around the corner. I should then be able to tell if indeed it was a "heat flare."

By the way, I noticed my nails growing faster and stronger too.

howdy Tree:Wave-Hello:, welcome to Neuro Talk, I too am opposite I sleep better now, too

congrats Kelly, :Excited:

for fact i am doing well enough to stop taking my speeder(provigil) each day :yahoo:, again Tree, welcome to the club,

ladies:Tip-Hat:

howdy all, you know what I noticed tonight, I cooked on the grill the last two nights got all of dinner ready prep and all, and stayed outside and it was really a bit warm its was 93-95the last few days so it was warm out and i was next to the grill, am pretty sure it was my intellect that saved me:eek: I went and sat down on the swing and rocked while i waited watered some plants, and I am doing ok, not fantastic but am doing ok. I will take it, cause i am not wiped out, like my normal had become,

muy beuno

good evening everyone

I was dizzy today for about 2 hours. I've been on the 3 mg. dose for 1 week now.

As far as sleep, it varies from night to night. I may wake up 5 times, but I go right back to sleep.

Last night I only woke up twice. :)

I will post a list tomorrow that I got from the pharmacist. I told him about my dizziness and so he looked up Naltrexone possible side-effects. There must be 3 dozen or so!!! But, as you know, everything that anyone has experienced and reported must be listed.

Thanks for the welcome. I'll be dropping in to see how all are doing on LDN.

Hi, and :welcome_sign:, Tree.

Fatigue has been an issue for me long time before I started LDN, and I had been on an antidepressant (to combat fatigue) for about a year prior to starting on LDN. I didn't notice much of a difference either way when I started on LDN, but I did notice a big improvement in my fatigue level when I managed to ditch the antidepressant a year later.

I wall-walked when I went on LDN, and there was considerable improvement in this area. That was not something that changed immediately, but over time (about 9 mo - 1 yr), I noticed I had stopped wall-walking and wasn't thinking about every step on uneven surfaces.

Balance is something that comes and goes with me, especially with heat, but it's never again reached the point I was at pre-LDN.

Cherie

Are your thyroid issues thought to be connected to the MS, or is that seperate? Is the balance related to the MS too, or could that be from the hypothyroid? Are they suggesting that the LDN may have contributed in any way to the hypothyroid? :confused:

I jumped ahead in your posting a little . . . but how is it that you have enhancing lesions when you are PPMS? Isn't that rare? Do you have relapses too, ie. are you perhaps PRMS instead?

Did you have a spinal lesion or TM-type attack prior to or since going on LDN?

Cherie