WooHoo, my Friend....Keep it up..

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..

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

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?

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..

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. I know it the $$ thing but that's just wrong.... 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.

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

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?

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

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 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