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..

argh lady_express.

You make me feel as if I need to defend my brother. He is not "too LAZY to do his own reading" and just not familiar with the drug. He is not omnipotent (all powerful) nor omniscient (all knowing).

This drug is not a common MS drug or even a common neurology drug. So he is cautious but he had no problem with it, he deferred to my MS doctor to hear what the guy had to say. He saw no harm and said to keep him informed.

He has a caseload of patients and he is one of the GOOD GUYS.

I will readily omit that your comment about neurologists being "LAZY" and asking a rhetorical question in regards to my brother's honest QUICK response makes me a little P.O.ed.

I was all set to leave it alone until you decided to tell me that my answer confirmed your suspicion about neurologists.

He was not familiar with it, THAT WAS ALL. He is not an MS neurologist.

For the record, I have been to several neurologists looking for a good fit. NOT ONE of them has every treated me with disrespect. If he/she did, I would have the good manners to say something so that he/she would have the opportunity to correct their attitude.

Twink since you have your prescription, just call my friend here in Phoenix. I will PM you with her Apothecary phone # and she may have you fax the script. You can ask her about mailing it to you or I can, just PM me. I will ask her, no problem.

Argh. Being that I grew up with a really smart brother (it was no fun following him in school, teachers always got SO EXCITED to have his sibling and ha! was that an education for them!), I really choose to ignore overt anger over neurologists. But don't push my buttons, I am a nice old lady until I get a little hot under the collar.

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

If you look back, you will see I made that orginal comment prior to you posting your message from your brother. It wasn't personal . . . just based on my experience over the years.

Please don't feel you need to defend him in any way, and like I said, I do appreciate that they have no idea about this drug. I wasn't really meaning to target neurologists or MS Specialists with that comment either, as all kinds of doctors (including mine, who is the BEST GP out there!!!) seem "too lazy" to do their homework on it.

In retrospect, maybe "lazy" wasn't the right word either . . .

My doc did go on the internet, just your bro did. His first thought was that it could be another "snake oil", but he really didn't see any harm in it either. He wanted to make sure I knew what I was getting myself into/setting myself up for though (he was sure it wouldn't help), so he made me do all the work on the written "risk assessment". That's probably the real reason, not laziness.

Sorry, poor choice of words . . . but not directed at your brother at all. The only reason I brought it up again later, is that he mentioned there were no studies on the toxicity of Naltrexone . . . which is not at all true. He was giving a quick, off-the cuff comment . . . which might scare the pants off of someone who would otherwise want to try it. Many of us trust the professionals to know what they are talking about before they say anything, but that is not my experience with talking to them about LDN.

Cherie

Ok, go back to your corners now..

This thread is about helping people, who want to try LDN, so lets try to keep it that way, please.

Sorry, Sally

and Aarcyn.

Cherie

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