I just got back from the neuro.

It went like I thought. He told me that he'd heard of it, but that his opinion was that people who are "feeling better" while on LDN are getting a placebo effect, and that he didnt think that it does anything.

He also mentioned something about side effects, but really didnt get into what those side effects are.

So, no LDN for me...(at least from him...)

*grumble*

Oh well. I'll ask my regular doctor about it the next time I see him and see if he'd be willing to let me try it.

Sorry to hear, but I can't say I am really surprised.

One of the obvious disadvantages to not having trials is that it has not proven to be effective for MS . . . however, clearly it has not been "disproven" either. Not sure how he can be so convinced it's placebo, given that.

Either way, since it's harmless enough . . . why not let people be happily living pain-free, without a claw hand, while urinating properly, having semi-regular bowel movements, and with no more cog-fog . . . even if that is just a placebo effect?

Hope your doctor is more open-minded.

Cherie

Sorry Erin....better luck with your PCP..

Great going, Twink....good luck..

I just think that he's one of those doctors that doesnt want to risk anything by Rx-ing me something that he's not comfortable writing a Rx for. I understand that. I'll just ask my regular doctor about it the next time I see him.

My neuro at least had heard about LDN, he just has an opinion that it wouldnt do anything for me. I think that it might help, so I'll just have to ask another doctor.

At least my neuro didnt go off on me about doing research on the internet. He didnt seem offended that I was asking about LDN either. So, I didnt walk out of the office feeling like I'd been reprimanded.

My neuro told me that he thought I was doing better than before. I told him that I'd had a bit of dental work, and that the dentist said that every tooth she's replaced a filling in, had infection in it.

She thought the dental infections might have been having an influence on the MS, and the neuro seemed to agree with that. He told me to get the rest of my teeth fixed up and see if that helps me a bit more.

At least I had a pretty decent neuro exam today. I think he was impressed with my heel-to-toe walking. I was all over the place the last time I did the heel-to-toe, and this time I actually managed a somewhat straight line. So, at least there seemed to be some improvement in the neurological wacky-ness.

Yeah, Erin, I had MS-trouble from my tooth infection last year too. Glad you are making improvements since starting to take care of this issue. I did too.

I'm glad to hear that you do not feel belittled or intimidated by talking with your main healthcare provider. That is valuable.

I guess what frustrates me is that they always seem to have the final word on what they will "allow" us to try . . . even if there is no logical reason not to try it. In the case of LDN, it's not like there are known risks, or previously reported serious adverse events to take into account. They just don't know anything about it . . . but if they researched it, they would. It's that simple.

My neurologist was the same when I first asked, actually. Since then, I know the research center has rx'd to many people, and no doubt it has not worked on some. I talked to a lady the other day who got it from our research center, and he had rx'd it with her Rebif (but had not mentioned that interferons and LDN may conflict/not work together). Obviously he hasn't done his homework.

The bottom line is it is up to us to thoroughly understand the complexities, then fight for what we believe in. I have found no "logical" reason for a doctor to refuse to rx it though (so long as it doesn't conflict with what we are already taking), and lots of good reasons to give it a try.

Cherie

morning all got my script, going to go through skips, even my doc knew of skips too and the ldn he said its worth a try, starting me at 1.5 for starts and we shall see, i really hope it does me good and would love to cut down on other meds, this could be berry berry good

WooHoo!!!! Good wishes for You..

Congratulations and good luck, Frank!! As I recall, you have spinal lesions . . . and that damage is where I saw considerable benefit from using LDN.

Please bear in mind the information I provided Twinkletoes previously though . . . you will have to get up to 3.0mg - 4.5mg in order to realize significant benefit, at least according to Dr. B.

Sally, there is a lot of good information in this thread, and I would like to propose that we make it into a sticky. What do you think?

Cherie

Good luck, Frank!!