NMSS has provided a grant for LDN research

 
Post new topic   Reply to topic    msspeaks Forum Index -> MS - RESEARCH, ARTICLES, ABSTRACTS, DISCUSSION
View previous topic :: View next topic  
Author Message
lady_express_44



Joined: 22 May 2006
Posts: 1314
Location: Vancouver, Canada

PostPosted: Mon Aug 14, 2006 5:08 pm    Post subject: NMSS has provided a grant for LDN research Reply with quote

The NMSS has awarded Dr. Zagon, a researcher who works with Dr. Jill Smith (Crohn's/LDN trial researcher), a pilot grant to start working on LDN with MS.

Agate, I can't remember if you said it was ok to attach links to other boards for informational purposes, but there is a lot more information available about this on the LDN forum . . .

Can I attach it . . .?

Cherie
_________________
You can tell whether a man is clever by his answers.
You can tell whether a man is wise by his questions.
Naguib Mahfouz
Back to top
View user's profile Send private message Send e-mail
lady_express_44



Joined: 22 May 2006
Posts: 1314
Location: Vancouver, Canada

PostPosted: Mon Aug 14, 2006 6:36 pm    Post subject: Reply with quote

It's probably easier if I just provide the forum link, and if anyone is interested, they can follow up on the General Board, under a sticky called "Announcements".

REMOVED

There is quite a bit of information there on the potential mechanisms of LDN, if anyone is interested in that too.

Cherie

EDIT: As per Agate's request, I have removed the link to the LDN board.

For those of you who are interested in this information, feel free to contact me by PM or email.
_________________
You can tell whether a man is clever by his answers.
You can tell whether a man is wise by his questions.
Naguib Mahfouz
Back to top
View user's profile Send private message Send e-mail
Anonymous
Guest





PostPosted: Tue Aug 15, 2006 8:33 am    Post subject: Reply with quote Edit/Delete this post

That's great news - I remember reading on their site, that they were open to funding LDN studies if someone came to them with a well-designed one. People's own experiences with the drug are a nice source of info, but a real study just may help to give it that credibility that so many dr's need. It'll also help to shoot down the safety argument that some neuros present as a roadblock.
Back to top
agate
Site Admin


Joined: 17 May 2006
Posts: 5694
Location: Oregon

PostPosted: Tue Aug 15, 2006 11:16 am    Post subject: Reply with quote

Greta, have you tried mentioning LDN to any neuros?

I haven't, but I was wondering what kinds of feedback people are having if they ask the neuro's opinion of LDN, whether he/she would prescribe it, and so forth.
Back to top
View user's profile Send private message
Anonymous
Guest





PostPosted: Tue Aug 15, 2006 12:19 pm    Post subject: Reply with quote Edit/Delete this post

No - not for myself. I'm on Rebif and doing well with that and diet, so I'm not rocking the boat. Especially since Dr Bihari thought the interferons and LDN don't work together.

I am interested in it for my mom however. She recently started going to a fabulous new neuro. She seems pretty open to alternative stuff, since there's not much left for my mom. She's working on diet and exercise to keep her remaining function.

I'd love it if LDN helped my mom with urgency and TN pain. Those are really her two biggest issues. I just found Gazorpa's site and I'm going to spend some time reading through and talking to my mom about it to see if she's interested.

From what I've read at MSW - it seems like people who go well-prepared to talk to their neuros about LDN seem to get it. People who walk in and ask "what do you think about me doing LDN" are a lot less likely to walk out with an Rx.
Back to top
Anonymous
Guest





PostPosted: Tue Aug 15, 2006 1:01 pm    Post subject: Reply with quote Edit/Delete this post

I talked to my psychopharmacologist about LDN and got a script with no trouble.

I told my PCP I was taking LDN and he was open and interested, indicated he would have prescribed it for me himself.

I told my neurologist (ex-neurologist, that is!) that I was taking LDN and he laughed at me and asked who the hell prescribed it for me. I told him it was my psychopharmacologist (M.D.), and he shut up. Too late.

zenna
Back to top
agate
Site Admin


Joined: 17 May 2006
Posts: 5694
Location: Oregon

PostPosted: Tue Aug 15, 2006 1:11 pm    Post subject: Reply with quote

Good for you, zenna, for firing the numskull. Some doctors are really astoundingly arrogant know-it-alls.

I haven't tried LDN and probably won't, but I certainly think people who want it should be able to get it without a lot of mouth from the neuros.
Back to top
View user's profile Send private message
lady_express_44



Joined: 22 May 2006
Posts: 1314
Location: Vancouver, Canada

PostPosted: Wed Aug 16, 2006 8:20 am    Post subject: Reply with quote

I had a hard time getting it at first, but it seems once someone paves the way, it's easier for those who follow. All the neuros at the MS Research Center where my Neuro was, rx it to anyone who asks for it now.

Greta, I was required to do a "risk assessment" which evaluated LDN against the "danger signals for choosing an alternative therapy", put out by the NMSS. I have made it into a generic document, with c/w a letter requesting the rx from the doc/neuro.

http://www.larrygc.com/ldn/ldnrisks-doctorsletter.doc

Maybe you might find some of the info useful.

Cherie
_________________
You can tell whether a man is clever by his answers.
You can tell whether a man is wise by his questions.
Naguib Mahfouz
Back to top
View user's profile Send private message Send e-mail
Anonymous
Guest





PostPosted: Wed Aug 16, 2006 9:52 am    Post subject: Reply with quote Edit/Delete this post Delete this post

That's a good link Cherie - I'll keep that in mind. My mom's not on any DMDs and the neuro is of the opinion that there aren't any out there that will help her at this point. She's pretty into alternative stuff so I'm betting this will be a fairly easy sell. Good thought to push it as a symptom management drug. Thanks again for the info.
Back to top
Display posts from previous:   
Post new topic   Reply to topic    msspeaks Forum Index -> MS - RESEARCH, ARTICLES, ABSTRACTS, DISCUSSION All times are GMT - 7 Hours
Page 1 of 1

 
Jump to:  
You can post new topics in this forum
You can reply to topics in this forum
You can edit your posts in this forum
You can delete your posts in this forum
You cannot vote in polls in this forum
Create your own free forum now!
Terms of Service Purchase Ad Removal Forum Archive Report Abuse