Eddie, a week is not nearly enough time to see any benefits. Give it some time. It has to bring back, to a more normal state, so many changes in your body.

poetic license, first what dosage are you taking? I still get the hug, that's a "B" to get rid of, and I get burning of legs and feet, that I don't think there is any hope for. I won't add any other meds.

But so much of the other crapola has slowly gone away, even some residual damage from eons ago. I started on 12-15-08. I am on 3.0 mg. The CRABS made me a lot worse. I hate to think where I would be if I didn't switch to LDN. I have had MS for 30 + years. I was sooo much worse off, on any of the other drugs.

We are all different, give it more time. If you are on more than 3.0 mg you might have to lower it. If you are on 3.0 for 8 months, you may have to try to go to 4.5 mg. We have to find our own correct dosage. But slowly.

I am not a guru on this at all, many here have been on it a long time and feel so much worse when they run out of it.

Others will come on here and give their knowledge, I am just stating my opinion.

I hope it starts regulating your body very soon poetic license.

Eddie you need more time on it.

I believe in the CCSVI procedure too. That might help with fatigue, cog-fog, eyes, etc., if we ever get a chance at it. The darn Big Pharma's have gotten to those who regulate, and now want more trials on it.

Hi Eddie,

I started taking LDN 11 months ago. The first thing I noticed (after a month or so) was that I was way more tolerant of heat. Gradually I noticed that I was able to get a lot more done without getting fatigued. I'm busier than I've been in years and I'm handling it just fine - I don't need that day or two to recoup after a hectic week. I've stopped budgeting my activities.

On the other hand, nothing has changed regarding the altered sensation in my feet. They still tingle and feel numbish, although they really aren't numb. My ankles still "feel" stiff but they move normally.

If I had to sum up the effects for me, I would say that LDN had an effect on function, not feeling. Overall, I'm very happy and have had no side effects. I'm on 3 mg.

Oh, one other thing - before starting LDN I was having trouble with my right eye being dry all the time - for about a year and a half. Sometime after starting LDN, it returned to normal. Have no idea if the two are connected but nothing else changed.

I hope that if you hang in there, you'll gradually notice little improvements that over time become big improvements.

C

When I first started LDN, 7 yrs ago, I expected too much and was very disappointed that, it didn't make me better, on the spot.

I Struggled, stopped, started, raised the dose, lowered the dose and finally settled on 3mg dose for awhile. I raised my Paxil dose and tried to settle in and enjoy the little improvements that were happening.

LDN was not going to cure my MS but, I did notice better balance (I could close my eyes in the shower and not fall over), better bladder control, more strength and just felt better/healthier all around.

The endorphines were doing their thing and I was finally satisfied and even happy with the results.

My DD does better on her LDN and is in remission. She went off of it for a couple of weeks and had an exacerbation. When she resummed taking it, she, slowly went back into remission.

Like any other Med, it does not work the same for all and for a very few, who may be allergic to Naltrexone, it doesn't work at all.

Unless you are allergic, give LDN a good 6 mos to a year, before giving up on it.

Best wishes..

Thankyou and 3mg is my nightly dose. I'll keep the hope up. Honestly, I swear my arms felt less numb the night I got script. Didnt fill it yet, just the "hope" feeling I swear made it a lil better. Tysabri #7 is next week.

Poetic J please give us your dose.

Eddie, I get thirsty and drink a lot more water since on LDN. But that's okay: good lubrication for the bod. Good luck to you!

Had my phone appointment with LDN doc today. Told him about the two episodes of ON I had over the past two months. He suggested that I add a 1.5 mg. dose of LDN at noon in addition to my regular 4.5 dose (making a total of 6 mg daily). He said if I noticed increased spasticity to go off and try again in a week.....sort of like I did when I was increasing my 3.0 mg dosage to 4.5 mg. I asked if I should still try this since my ON had completely cleared up and he said I should. He said there was obviously some inflammation somewhere to cause the ON and, if it were him, he'd start the additional dosage now and as long as it didn't present any problems, to keep taking it. We'll see how it goes! Has anyone done this before? If you have, how did you do on the increased dosage?

I have never heard of anyone taking higher than the 4.5mg.....
according to the lowdosenaltrexone.com website, dosages above 4.5mg are likely to block endorphins for too long.....and interfere!!

"The therapeutic dosage range for LDN is from 1.5mg to 4.5mg every night. Dosages below this range are likely to have no effect at all, and dosages above this range are likely to block endorphins for too long a period of time and interfere with its effectiveness"

I think Doc S is just experimenting, Kell. I have my doubts, but, temporarily, it shouldn't hurt. I think Dr Bahari did that a couple of times, but I don't think it worked?

Use your own judgement..

What I find interesting is that the additional 1.5 mg he told you to take Kelly was at noon, not at bedtime. Why do we take it at bedtime, if at noon it may have a benefit too? I thought we blocked and made more Endorphins at night while we sleep? I am getting confused here.

Do you think it would benefit in other ways? Like my Neuro said when I relapsed, that maybe I should up my 3.0 mg to 4.5 mg to have prevented a relapse in the first place. I am wondering what they know and we don't, or should I say I don't!

I have blood work to get done soon, so I think I might try to add a 1.5 mg at noon, in addition to my 3.0 at night, to total 4.5 mg after the blood is taken next week.

At night I couldn't handle 4.5 mg for the one week I tried it. Maybe in a divided dosage it may work better for me too. Just thinking out loud here.

Kelly I read somewhere about 5.75 mg, but I don't remember where or why. Or even how, unless in the liquid form, you could get that dosage. So 6.0 mg is not far above what I read. I have to find out where I read that. Now that will bug me not knowing.

Let us know if you try it, and how it works for you, okay? Good luck Kell.
I'll do the same next week, add a noon dosage.


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Yeah, after I hung up I thought of all sorts of questions to ask.......

I got a prescription for 1.5 mg in addition to my usual 4.5 mg so that I could try this experiment out. I get the feeling it's going to give me spasticity in my legs but time will tell. It's worth a shot just to see if there is any improvement. There is some sort of inflammation on my left side as my mid section is mildly numb and there is one little patch on my back that is itching like crazy!