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-   -   LDN Information & Check-in 2 (https://www.neurotalk.org/multiple-sclerosis/71392-ldn-information-check-2-a.html)

KarenMarie 05-04-2009 10:00 PM

When did any or all of you start to notice a difference after starting the LDN ?? Or not a difference but a slowing of the downhill slide ??

SallyC 05-05-2009 10:13 AM

It's different for everyone, Karen. Some feel great, right away and a decrease in symptoms. Others may take awhile to feel the effects and benefits. A few, who give LDN at least 6 months, feel nothing and a small number are allergic to the LDN or the filler and stop.

I remember 6 yrs ago, when I started LDN,I felt better right away (I'm sure it was the lift in endorphins).. I remember being upset that I wasn't having more symptom relief (I expected too much :rolleyes:) I found that SPMSers don't get the same benefit as a RRMSer does.:mad:

Anyways, I felt good, for the first time in years, so I kept taking it and within and after 6 months, slowly, I saw improvemnts in my symptoms. Ihave remained exacerbation free, except for a few heat related attacks, which were gone when the weather got better and I cooled down.

If you started out with a lower than 3mg doseage, you may not notice the full effect, until you have titrated up.

Keep it up, Karen and let us know how it goes. :hug:

marion06095 05-05-2009 12:57 PM

I remember when I first started taking LDN I was always second-guessing myself. For example, before LDN I had to hold on to the wall while I rinsed my hair in the shower because my balance wasn’t good enough to stand while my eyes were closed. Then came a day that I inadvertently noticed that I didn’t have to do that any more. It was a small thing, and I passed it off as being just a slight variation in that symptoms. But when I noticed it again a few days later, I wondered if it was LDN. Before long I was noticing little things all over the place. Nothing earth shaking, but one by one I started to realize that it couldn’t just be my imagination. I don’t think I realized how early the changes started until I viewed it all in perspective – hindsight. I hear it is always 20/20. Anyway, that is how it happened to me.

mom2five 05-05-2009 12:58 PM

Quote:

Originally Posted by KarenMarie (Post 505749)
When did any or all of you start to notice a difference after starting the LDN ?? Or not a difference but a slowing of the downhill slide ??

I think this is hard to track and different for everyone. For me, it's more like Marion's experience. Every once in a while I catch myself doing things that I used to not be able to do. The main thing for me is more energy. I still have slow days here and there, and I still get exhausted when I overdo it...but I am keeping up with things sooo much better then I was before.

I have also noticed that I am able to manage my stress better.

Be patient and realistically look back every once in a while to see what is different.

Kitty 05-05-2009 01:25 PM

Everyone responds differently. I noticed more energy and stamina. I also noticed better balance. It wasn't immediate....and you sort of have to look back over several weeks to see what's improved.

bombi 05-06-2009 08:44 AM

Good morning LDN group.

I started LDN about a month ago and am currently doing 20 mg at bedtime.

I have observed that my back and neck pain (spasticity)has decreased and I seem to have more energy. I haven't noticed any improvement with walking yet but am holding out hope.

I have experienced no side effects at all except for the dreams which I enjoy.

SallyC 05-06-2009 10:17 AM

I hope you meant 2mg and not 20mg..:eek:

Congrats on the good report, so far. That's encouraging..:hug:

Quote:

Originally Posted by bombi (Post 506456)
Good morning LDN group.

I started LDN about a month ago and am currently doing 20 mg at bedtime.

I have observed that my back and neck pain (spasticity)has decreased and I seem to have more energy. I haven't noticed any improvement with walking yet but am holding out hope.

I have experienced no side effects at all except for the dreams which I enjoy.


Kitty 05-06-2009 11:44 AM

Quote:

Originally Posted by SallyC (Post 506505)
I hope you meant 2mg and not 20mg..:eek:

Congrats on the good report, so far. That's encouraging..:hug:


I know! I thought I'd read it wrong.....if I took 20 mg. I don't think I'd be able to walk! :eek:

KarenMarie 05-06-2009 04:29 PM

I'm only on 1 and 1/2 for another week - then 3 for 3 weeks and then 4 and 1/2 forever more - I don't expect wonders but would certainly be grateful for some semblance of balance to return !! I lean over to pick up something and am soon on the floor clutching whatever it was I was grabbing for !!

bombi 05-07-2009 09:16 AM

Yeah sorry 2mg not 20. But so far so good.


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