You're exactly right, Sally. Whatever dosage works best for you is what you should be taking.

I'll keep attempting to go up to 4.5 but if my body keeps telling me that's too much I'll go right back down to 3.0. I'm assuming one day my body will get tired of fighting me and accept the 4.5 dosage!!

The doc gave me a rx for 3.0 capsules and 1.5 capsules so that I can go up to 4.5 when I feel the time is right and, if that works, he'll give me more of the 1.5's so I can sustain that level.

Frank, if the lower dosage works for you then just keep taking it! We're all different so it's not unusual for us to have different doses that work best for us.

Sally, I'll let you know when and if I ever get the 4AP and how it works for me. Thanks!!

I'm cool, I'm cool.

I just don't want to be giving out incorrect information.

Cherie

Well, whatever "episode" I was having has left and I have no more dizziness or visual problems. The weather has cooled off quite a bit and that always helps me.....but it's funny that I always seem to have my flares in October.

Anyway, I've started taking 4.5 mg. each night and have had no bad side effects....no spasticity or anything. I have much more energy during the daytime hours but I'm not sure if that's because this flare is gone or I've upped my dosage. Either way I'm enjoying it!

I cleaned my entire house yesterday...it took all day because I kept taking mini rest breaks so I wouldn't get overheated. I got alot accomplished and always feel so much better with a clean house!

I hope everyone else is doing well!

I'm glad to hear you are feeling better, Kelly, and you've been able to adjust so easily to a dosage where you feel comfortable (for now).

I am still at 3.75mg, and will stay here for another week or two. I feel great on that dosage, whereas 4.5mg was causing the spasticity to act up like it does every year at this time. I've almost "climatized" now though.

I'm enjoying every day since April (when I had that tooth pulled), and am appreciating the stability.

Cherie

WooHoo, Kelly. Glad your dizzyness is gone and you made the transition to 4.5mg with no problems.

So Happy to see that you are still doing well on your LDN, Cherie.

I'm a happy camper, since the weather took a turn for the cooler..

I hope the rest of you are doing just as well, if not better..

It has been a while since I checked in with an update, so here goes:

I have now been on LDN for a couple of months, give or take. I am on a 3.5mg dosage. I remember when I first started LDN, I felt an amazing ease of physical movement, and an almost complete lack of the tremors that I had been having non-stop for years. I still have very little to no tremors. The ease of movement is still there, but along with this has come the realization that I now have a 61-year-old body that hasn’t been at all active in quite a few years. I guess that I have years of muscle wasting to undo. I often have the sort of body stiffness/pain that is understandable under the circumstances. It isn’t the same as MS stiffness and pain, though. It feels like I am an athlete who is training hard, and I guess that’s exactly what I am. I am building muscle mass that has been gone for years. To be honest, it feels wonderful – in a sort of awful way if you know what I mean.

On the practical side, before LDN I was a rollator/powerchair person when away from home, and a wall walker around the house. I have not used my power chair since I started LDN, and I have only used my rollator a few times; when I knew I’d probably want a place to sit down. I attribute my newly found mobility to an improvement in my balance, as well as a reduction in clumsiness.

In summation, I am still amazed at the improvement. I have had a few days where I haven’t felt all that much better, but those days are outnumbered by the days that I thank my lucky stars that I am one of the people with MS that is helped quite a bit by LDN.

Marion, I am glad to hear that LDN is working so well for you. Congratulations!

The method I choose to increase balance, strength and get some exercise is:

Yes, a mini-trampoline. It has done wonders for me. Don't laugh, it's fun! I use a stabilizing bar for balance with it...so no falling.

I do have a question for all of you "LDNers"...

I have RRMS and don't have a lot of symptoms that you all are describing. I am still quite mobile, no bladder issues, no tremors or spasticity. My main problems seem to be fatigue, headaches and optic neuritis...but that is only troublesome when there is an exacerbation or lesion.

Does the LDN address your symptoms or the cause?

Brenda

its hard to say and depends on which school of thought you follow. the general ida is that the LDN can interupt the progression of the MS and what ever symptom relief you get is a bonus. for me, my fatigue level is way better than before the ldn. i have a coworker who is now using the LDN for her MS too and she tells me her ON is clearing to the point where she can read things on the television again.

For me it has turned the clock back on some (but certainly not all) of my symptoms. I am more ambulatory, and my manual dexterity is much improved. As for LDN’s ability to stop progression, I cannot say as yet. I have not been on it long enough to tell. I have, over the past decade, experienced a noticeable (and sometimes frightening) decline in function. I expect that over the next few years I’ll be able to report what trends become obvious to me. Until then I am hoping for the best, and staying prepared for the worst

It seems to work differently for everyone, Brenda . . . just like all the meds.

For me it helped many symptoms, but I was a LONG way down the MS-track too. I had no expectations when it came to helping my symptoms, so I did look at that as a huge bonus. It may, but isn't necessarily going to help for the specific symptoms you have (and you don't have many yet), but the MAIN goal of LDN to is slow disease progression and reduce relapses.

Everything about this disease is basically "theory" at this point. They don't know what causes it, or why some of us respond to some meds, and others don't. They don't know if we all have the same disease, and they don't know why a person with one "apparent" lesion is totally disabled, and another person with 100 lesions is doing fine. All of the current meds we used are based one of many "theories", but so far none of those drugs have proven to make a lot of difference for the majority of people in the long run.

My decision to go with LDN is a personal one, just like everyone else's to make their choice. I want to feel as good as possible (and I didn't for a few years prior to LDN), I hope to have less relapses (just because I don't like them), and I hope the obvious disease progress to be slower. So far, that's what LDN has done for me, but I'd be happy if all it did was keep me "able" for as long as possible.

Cherie