anyone taking LDN?

[yselina24]

hi i was recently diagnosed and i have been obsessing on treatments, and research, symtoms etc (as I am sure many of you have) So does anyone take LND? I have heard alot about it but its not FDA approved for MS.  I wanna know what you guys have heard or your experience with it.
heres the web site
http://www.lowdosenaltrexone.org/

[yselina24]

thank you for your input. yeah i just noticed there was alot of posts on it.  ill read those first next time. thank you so much it helps so much to talk to yall! :)

[ShockedToday]

I am currently on LDN.  I started it in July of this year after giving Betaseron a try.  My life became a living h*ll on Betaseron.  It was definitely not the drug for me.  My doctor went over all of my options, but at that point trying another shot was not going to happen.  Ty I would never even consider since I have children to raise.

Anyway, I knew going into the appt that I wanted to try LDN and was prepared for a fight to get an RX for it.  I was shocked when I brought it up and the doctor (MS specialist) said he had several other patients on it that had improved considerably and would be happy to let me try it.

I take 4.5mg.  I started and have stayed at that dosage.  It took about 1 1/2 months to really feel better on it.  That could be partly from trying to recover from the Betaseron side effects.  Anyway, I have not felt this good in years.  I sleep better, have more energy, my tingly feelings have almost all gone away, and my tremor is greatly improved as well.

The downside is that my spasticity in my legs is much worse.  Mainly in the mornings for the first hour or so, I find it harder to walk.  If I work through it by just doing my regular routine, I end up being able to do my step aerobic workouts at night.  If I cater to the spasticity, I have found that I will be more drained by the end of the day.

HTH

[Lulu54]

Hi Yselina, welcome to our forum here - I hope you will find lots of useful information.

LDN comes up quite often in questions and a few people here are using it for their MS.  I just heard a neuro speak this week and was asked this same question.  As he  pointed out, there is absolutely no scientific evidence that LDN works for MS.  There is plenty of anecdotal evidence that patients get almost immediate relief  from it, but that usually does not last, according to this doctor.

His advice was to take one of the FDA studied and approved disease modifying therapies. Unfortunately not everyone has that option, and the LDN provides some sort of affordable treatment.

Good luck with your research and decision making. I know its a tough spot to be in initially.  Of the DMD's, it really is a matter of personal choice as to which one to take if you decide to go that route.  As my neuro said a while back, its like the Pepsi/Coke challenge.  They are all the same, just a slightly different product that depends on personal preference.

And remember, whatever you decide to use, the improvement doesn't happen overnight.  You have to commit to a therapy and really stick with it for a long while to know if it is making a difference in your disease progression.

Welcome again!

my best,
Lulu