[SallyC]

There are many People here, who are either on LDN or thinking about getting on it, so, I thought a check-in thread would be nice.

I've been on 3mg for the first 2.5 years and..... now 4.5mg of LDN for 5 years, in April. I started out thinking it would cure me, or, at least, make my MS symptoms go away. Most people with RRMS, taking LDN, touted that it stops MS progression in it's tracks and that symptoms either went away or were greatly reduced.

Well, that didn't happen for me and one of the reasons is that I was already SPMS when I started LDN and it is not a cure and will not go back and wipe out permanent nerve damage. . It did stop my progression of disability, lessened some symptoms and even stopped some of my symptoms.

The only side effects I had was a bit of insomnia and stiffness of legs, in the first few weeks and reduced my dose from 4.5 to 3mg and that took care of it. I was using a walker and a scooter then and am, now. I have progressed in age, however and that has not gone unnoticed..

OK, tell us how LDN has or has not helped you, any side effects you may have had or anything that may help, so that others here may have the knowledge (although anticdotal(sp), to make a decision to try it or not.

Thank You All.

Next........

[Erin524]

Originally Posted by SallyC

There are many People here, who are either on LDN or thinking about getting on it, so, I thought a check-in thread would be nice.

I've been on 3mg for the first 2.5 years and..... now 4.5mg of LDN for 5 years, in April. I started out thinking it would cure me, or, at least, make my MS symptoms go away. Most people with RRMS, taking LDN, touted that it stops MS progression in it's tracks and that symptoms either went away or were greatly reduced.

Well, that didn't happen for me and one of the reasons is that I was already SPMS when I started LDN and it is not a cure and will not go back and wipe out permanent nerve damage. . It did stop my progression of disability, lessened some symptoms and even stopped some of my symptoms.

The only side effects I had was a bit of insomnia and stiffness of legs, in the first few weeks and reduced my dose from 4.5 to 3mg and that took care of it. I was using a walker and a scooter then and am, now. I have progressed in age, however and that has not gone unnoticed..

OK, tell us how LDN has or has not helped you, any side effects you may have had or anything that may help, so that others here may have the knowledge (although anticdotal(sp), to make a decision to try it or not.

Thank You All.

Next........

I've been reading about LDN. I'm really wondering if I can get my neuro to write me a Rx for it. (seeing him tomorrow)

I wonder if he'd be willing to write the Rx for me. (he probably wont)

I'm RRMS, as far as I know. I only got diagnosed last year (January 9th)

I'll have to ask him what he knows about LDN and see if he'd be willing to let me try it.

How long does it take before you start to see improvement with LDN?

[PolarExpress]

I've been taking LDN for about 3 yrs now..At first, my symptoms were worse, but got better after the first couple of weeks. I've been up to 4mgs for most the 3 yrs, that seems to work best for me. I'd wonder sometimes if it was really making a difference (PPMS), but when my rx ran out & I had to wait a couple weeks to get it, I really noticed the difference. Funny, when I quit Rebif and Copaxone, I felt better, not worse.

[SallyC]

Originally Posted by Erin524

I've been reading about LDN. I'm really wondering if I can get my neuro to write me a Rx for it. (seeing him tomorrow)

I wonder if he'd be willing to write the Rx for me. (he probably wont)

I'm RRMS, as far as I know. I only got diagnosed last year (January 9th)

I'll have to ask him what he knows about LDN and see if he'd be willing to let me try it.

How long does it take before you start to see improvement with LDN?

The results vary, Erin. Some people notice a change right away (I did) and some, like Polarexpress don't see it for a couple of weeks. And some say it improves over time.

You should go to the LDN Homepage and copy some material off of that website and show it to your Doc. Most Docs see no harm so they will prescribe it, just to see what happens.

Good luck.

[lady_express_44]

I've been on LDN for almost 3 yrs now too.

I've had MS for (at least) 17 yrs, as of this May, and have had some hard times along the way. I had two paralysis attacks, and the last one in 2003 left me with considerable damage. I was having attack-after-attack for the 2 year period after that, and things were not looking good.

My neuro and doctor did not recommend the CRABs for me because most of my damage was in the spine. I had only 3 brain lesions, after all those years, but the spinal ones were big and bad.

I started researching other options in 2004 and ran across LDN. It took me 6 months, a threat to go to Mexico to get it, and a very in-depth "risk assessment" paper to convince my GP. At first he rx'd it for a month, then three, and now annually.

I must admit I was afraid to try it because almost no drugs agree with me. I adapted up VERY slowly, got the PURE drug with no fillers, and I went down and up a few times before I settled at 4.5 mg.

The first few weeks, I had amazing changes. I had had a claw hand for 5 yrs already, and it fully recovered. My bladder and bowels had not functioned properly in 2 yrs, and those problems went away. The most important improvement though was that it took away my spasticity pain, which was almost unbearable.

There were other improvements, over the next 9 months, and when I went back to the neuro at that point, my EDSS dropped down a whole point. I've had a few attacks since I started on LDN, but they were nothing like what I've been through before, and I recovered very quickly. The MS has not noticably progressed since I started on LDN either.

Cherie

[SallyC]

Bumping this up for Beth..