i asked my neuro for ldn...

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

i asked my neuro for ldn...

Postby sofia » Sat Apr 17, 2010 2:22 am

he said it proven to have very few and mild side effects, that it is a well tolerated drug, but that it has not been proven, no better effect then in placebo group, so the answer was no, i could not have that 8O
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>
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Postby Algis » Sat Apr 17, 2010 4:35 am

It's up to you to: Bypass his blah blah and order it from a compound pharmacy close to you (or not). It's dirt cheap.

Best to you.
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Postby Loobie » Sat Apr 17, 2010 5:52 am

I 100% second what Algis says. Of course we have no idea how it's 'messing with our disease', but I do know one thing. It really helps regulate my sleep. And if for only that, I'm an LDN fan. Just got my fourth bottle yesterday and plan on staying on it. Hey, I almost think the neuros LIKE the side FX of the CRAP drugs as maybe they think it should give you the perception that something is actively doing something.

All it really ever did for me was make me feel like ass and LDN doesn't. Word of caution though, do NOT take it during the day no matter what the Penn State web page says. That was a disaster for me. It apparently helps regulate some other rhythm, like a circadian rhythm, that happens every 12 hours or so and if you take it during the day there's a chance you'll be like me and feel like you're getting sick every afternoon. I started up again at night and haven't looked back.

I ended up having a long talk with Skip of Skip's pharmacy (one of the compounding pharacies that's big in LDN) and he set me straight. When I answwered yes to the first five questions he asked me about "are you feeling this way?" since I was taking it during the day, I figured I'd take his advice to NOT do this during the day. He's a real trip, but he was right.
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Re: i asked my neuro for ldn...

Postby euphoniaa » Sat Apr 17, 2010 5:05 pm

sofia wrote:he said it proven to have very few and mild side effects, that it is a well tolerated drug, but that it has not been proven, no better effect then in placebo group, so the answer was no, i could not have that 8O


Hi sofia,

I managed to get LDN and felt pretty good on it, but I went through quite a few doctors before I got the first prescription - and it definitely IS a prescription drug, although only a few mg of one. You will need a scrip before taking it to a compounding pharmacy like Skip's - that's where I got mine, too.

Here's a link to the thread here where I gave my experience on LDN.
http://www.thisisms.com/ftopict-8609.html

I'm trying to remember how many docs I asked before I finally settled for one who did LDN consultations and scrips by phone (Yikes!) and it cost me a bundle, but the idea of taking one of the CRAB meds scared the holy crap out of me and I was determined to try LDN.

Let's see...
    **my neuro at the time just flat out said no
    **My long-time PCP panicked and ran down the hall to call my neuro to tell on me...
    **I switched PCPs, and that one told me she couldn't give me a scrip for LDN because crazed drug addicts might attack me to steal it...she suggested bee venom therapy or mercury amalgam removal instead... 8O (I hear she's currently under investigation as one of the top pain pill distributors in the country)
    **the Phone-In LDN Doc was forced to stop doing phone consults altogether after a couple of months
    **a new PCP finally prescribed it for awhile, until she switched medical centers, and fired me as a patient with a certified letter...


Of course, any one of them would have prescribed me one of the powerful, side effect producing CRABs instead, or most any other med (except marijuana...). My1st neuro even handed me scrips at my first visit, for symptoms I didn't even have - and they were for dangerous, addictive meds I didn't ask for. Then later she fired me, too - for not taking them.

Best of luck in getting a scrip for something that makes you feel better instead of worse! :)
P.S. I've had some of the worst docs ever, but also some of the best, too. :)
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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: i asked my neuro for ldn...

Postby euphoniaa » Sun Apr 18, 2010 6:47 am

euphoniaa wrote:
I'm trying to remember how many docs I asked before I finally settled for one who did LDN consultations and scrips by phone (Yikes!) and it cost me a bundle, but the idea of taking one of the CRAB meds scared the holy crap out of me and I was determined to try LDN.


Oops, it just dawned on me that this part of my post about the cost wasn't clear. Paying to get my original scrip for LDN was the part that cost a lot - the LDN itself costs only a few dollars, even without insurance covering it. :) When I finally convinced a local doctor to prescribe it, the cost was only for the med.
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