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Old 07-21-2009, 05:06 PM #311
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All the MS Specialists out at UBC MS Research Center will rx it, or at least they were still doing so a month ago. I would contact them, or ask your mom's GP to contact them (or her current neuro) for confirmation that it is A-ok for the GP to do so.

I believe the MS Specialists at Bby Hospital MS Clinic will as well.

Is your mom seeing a neurologist vs. MS Specialist?

My doc (GP) does, but he isn't taking any new patients.

You could try calling some of the compounding pharmacies around town (where-ever you live) and ask them (on the sly) for the names of doctors locally that they know of who are rxing.

There are also some alternative doctors around that will rx it at a price, but it's been years since I've looked into that angle.

If you get desperate, PM me and I'll try to come up with some other ideas. The problem is that ANY doctor is likely going to want to know the patient before rxing a compounded med ...

Cherie
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Old 07-21-2009, 05:19 PM #312
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Default LDN for PPMS in YVR

Thanks for getting back to me, Cherie
This is very interesting -- my mum IS seeing a Neurologist at teh UBC MS clinic and he was the one who said that no one at UBC was prescribing LDN.

Now your comments have me confused and admittedly a little frustrated. I hate being stonewalled, if you know what I mean.

We have a friend who is a pharmacist and has his own pharmacy...which is a start, just not sure why my mum's MS doctor is being rather uncooperative.

Any thoughts? Also, not sure how to PM you?

New to this chat-thing!

TL
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Old 07-21-2009, 07:09 PM #313
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Welcome to NeuroTalk, TL. I sure hope you find a way to get your Mum on LDN. I think she will feel better.
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Old 07-22-2009, 09:11 AM #314
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Hmmm, that's interesting.

I know that the previous Director, Dr Devonnshire, was very pro-LDN, but she moved onto another position there in research or something. I also know at least some of the MS Specialists rx it, because I have friends that get it from there. One lady contacted me about it just about a month ago, and she went through her MS Specialist out of that facility to get the rx. She has been on it for the last month.

What I will do is send you the name of the two that I know that rx it there, by way of PM. To look at your PM's, go to the right corner of this screen where it says "Private Messages Unread 1, Total 1" and click on the underlined word. It will take to your private mailbox, where there will be a message from me.

Cherie
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Old 07-22-2009, 09:16 AM #315
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You know that really frosts my cupcake! I’ll bet that doctor didn’t even bat an eye as that lie came rolling off his tongue. I swear these manipulative doctors should save up and buy an ethical clue!
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Old 07-22-2009, 09:45 AM #316
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I type a big long response and lost it.

Unless something changed recently, it may be that only some of them rx it.

It seems the old-timers who've been around since the CRAB trial era are the one's that are ok with rxing it. I got the impression that they don't have much faith in the options available to us ...

Unfortunately they are also rxing it to those on the interferons, so maybe they've had some not so great results and decided to stop. I don't know.

Cherie
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Old 07-23-2009, 10:46 PM #317
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I get these email newletters. For good or bad.. I don't know, but here it is.

In this week's eMS News. Rocky Mountain MS Center

July 23, 2009

MS Therapies in the Pipeline:
Low Dose Naltrexone
Breaking News July 23, 2009

In this week's eMS News, we continue with our series, MS Therapies in the Pipeline

A web search of low dose naltrexone (LDN) brings up countless sites, each of which offers a differing account of the efficacy and safety of the therapy as a treatment for MS.

Click on Low Dose Naltrexone (LDN)

https://app.e2ma.net/app/view:Campai...reaking%20News
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Old 07-24-2009, 11:05 AM #318
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That is the usual response that comes from the scientists/Docs...."We need more studies"....but, none of them are willing to do them for free.. Sooooooo, we keep taking it and feeling a bit better because of it, and they keep saying the same thing.
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Old 07-24-2009, 11:07 AM #319
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If you scroll down to the article titled Julie's Low Dose Naltrexone FAQs: Dose Timing it talks about the time you take your daily dose of LDN.

http://ms.about.com/?once=true&nl=1

I always take mine before I go to bed - usually somewhere between 9 PM and 11 PM. Sometimes earlier...sometimes later. I don't trust myself to fall asleep and then remember to take it when I wake up in the wee hours of the morning. I always wake up during the night, though.

What time does everyone take their LDN? Has anyone tried taking it in the morning?
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Old 07-24-2009, 11:46 AM #320
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Kell, some have self dosed themselves in the morning, but went back to bedtime, because it didn't work.

The idea is to have your endorphins blocked for a short time before your new endorphin production happens, which takes place in the wee hours of the am...between 1 and 4. I take mine around 11pm, but anytime between 9pm and 1am is OK.
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