well folks, here i am. one month in. i started with an official DX of deff relapsing remitting multiple sclerosis back on 9/8. i started on the LDN on 9/9. now, a fair full month later on 10/12 im proud to report that ive had no new SX or even worsening existing SX.thas one down eleven to go. ive been given one year clean as the standard for deciding if im in a full remittion and not just having a bunch of good days strung together. so i have to go one full year with no new SX and no new liesion activity on an MRI and my neuro will be happy. the new script he wrote for my LDN has enough refills for that year and we;ll evaluate things next october.
but i gotta tell ya, im feeling good.ive been back to work for a few weeks already but im getting close to 'pre onset' hours and im close to asking our head dog trainer if i can have my spot on the crew back

Thanks, Twink. I guess I am still at the stage where I am flabbergasted by the improvement, so y’all are probably going to have to put up with my incessant cheeryness.

:yahoo:

Your cherriness is contagious. I wish you continued improvement.

Are most of your "problem" lesions in your spine, marion? Just curious because I had considerable symptom improvement too, and mine are.

Cherie

My new neuro allowed me to "try it" for 9 mo, but it wasn't her who was rxing it anyway. My doc made me go month to month with my rx, and after the 9 month mark, started rxing it on an annual basis. Even now, 3 1/2 yrs later, I doubt he "believes" the LDN is helping me at all . . . just that as long as I am happy, he is happy. ;)

Cherie

Lady, I have never had an MRI of my lower spine, but my cervical spine is clear. I am told that the lesions in my brain are typically MS in nature, and are too numerous to count.

I had my Neuro appointment today. He went over the films with me and showed me ones from last April and the ones from last Monday.

There was an existing lesion that was enhanced via the dye on the most recent one. It was not enhanced last April. It's pretty large and he said it is a T2 lesion. He did tell me that my sx are being caused by existing lesions (no new ones thank goodness). My balance issues and vision issues are caused by this lesion which is on the left side of my brain, thus my right hand is numb.

I need some opinions. I've been taking LDN since 9/1/2008. Just a little over a month. Do you think I've been taking it long enough for there to be any significant improvement in the progression of my disease? Should I continue to take it? I definitely feel better when I do.

The Neuro is pushing hard for Ty and I just do not want to go that route. Plus....come the end of December I will have no insurance anyway so that sort of takes care of that for me! :rolleyes:

My gut says to give the LDN a chance.....this lesion could have been enhanced even before I started the LDN and would have caused me problems whether I started LDN in September or not.

I think he was a little irritated at me that I didn't want to begin the Ty but like I told him I have no way to pay for it after December. Like all doctors they really don't want to discuss finances with you. :rolleyes:

So....that's what it is for me. I'm leaning towards just continuing with the LDN and see what happens over the next 6 months. What do ya'll think?

You answered you own question, Kell....I'll second the motion....Stay On Your LDN.:D

theres no guarentee that the ty will do any better for you than the ldn, thats what gets me about how hard my neuro was pushing for me to start the copaxone. the copaxone only says it can, not will, shorten exacerbations in frequency and duration.
same thing with the LDN, the big difference is i can afford the LDN. and i certainly think it was the LDN thats helpped me get this far.its been suggested to me that my recovery to this point was just the natural run of the illness and not the LDN, but the same thing could be said of any of the crab drugs. at least they have an idea of how the LDN works

If I were in your shoes I too would say go with the LDN.

If for some reason I had to stop Rebif (like my liver), I don't think I would try anything else, just continue my LDN.

Kelly, I am sorry you are dealing with sx from an existing lesion, but happy that you do not have any new lesions. I am still considering LDN and plan on discussing it with my neuro next month at my appointment. Even though I have no experience with LDN, it seems as if one month is not enough time to make a decision as long as you are not dealing with any nasty side effects.

Flute, You are right. None of the CRABs or tysabri are a guarantee against progression. But my problem is that there are no studies at this point that demonstrate that LDN may aid in slowing down the progression of ms or the number of lesions, despite what a few doctors may claim. I really wish there would be more studies, but I understand that there is little incentive for any of the drug companies to sponsor these studies.

Thanks for the responses ya'll. I'm going to stay with the LDN. And I'm also going to look for another Neuro....or possibly just go to my PCP until Medicare kicks in.

Yesterday while I was at my appointment he told me (again) how he thought Tysabri was the drug for me. I (again) told him that I did not want to go that route and it really didn't matter because I had no way to pay for it after December anyway. He seemed to get annoyed that I wasn't open to his suggestion and the appointment turned sour after that. He pretty much dismissed me by saying "come back in six months....if you want to." I doubt I'll go back to him. :(

Kelly,

Sorry the appointment did not go better. I wonder how many doctors have any idea of how expensive the drugs are that they prescribe. I hope that LDN does help you. Would you consider getting into a trial for a new treatment? Then the drugs, MRIs, and exams would be covered.

Kelly, it is too soon to judge whether LDN is going to work for relapses or progression, definitely. How long have you been at 3.0+ mg? Even if it DOES work in the longer run, it doesn't mean we aren't going to have a few relapses, or a little progression along the way.

I have found infections set off my relapses . . . so this is something you have to stay on top of, whether you are on LDN or not.

It almost sounds like your neuro as a vested interest in you taking Tysabri. Who knows what that might be (financial, or just a bet with a buddy to see who can get the most people on that med :rolleyes:), but he should not be presuring you like that . . . especially knowing your financial limitations. My neuro "mentions" other options . . . or at least she did for the first few appointments, but now she is happy if I am happy. :)

Tysabri has a record for reducing relapses by 68% (compared to placebo), but a reduction in relapses does not necessarily amount to anywhere near an equivalent reduction in disease progression. The same is true for reduction of enhanced (or virtually any kind) of lesion.

Long term studies have shown that the vast majority of people do not benefit in the long run (with a reduction in disease progression) from the drugs that we currently try . . . so we are using them to (hopefully) have less relapses, and (hopefully) less holes in our brain. But, they don't actually work (for most who try them) to reduce progression of the disease, ie. disability in the longer run. That's not good enough for me, especially if it is costing $100,000 a year!!

I would give LDN a year, unless you feel terrible all the time, or you get worse (not "old" lesions acting up, but new one's).

Cherie

I agree, Cherie. I'm going to give it at least a year (or longer). I'm not convinced that any of the CRABS do much of anything. And I feel better on LDN than I have ever felt taking anything else.

hello all sorry been down and out as of late, and I am my worse enemy:Bang-Head: can we say i did too much these past 8 days i cant move today woo hoooooooooo which is good i really didnt want to move today

peace everyone

How's everyone doing?

I'm still hanging in there....taking my 3.0 dosage each night. I'm still dizzy but it's letting up just a bit each day. I know not to expect it to be gone overnight so I'm just taking each day as it comes.

I have a phone consult with the doc on Monday....I've got to remember to set my alarm that day so I don't forget!! I forgot my last appointment....:o

Hope everyone else is doing well. I saw some posts from others on LDN who were having great results! I'm so happy for you.....isn't it nice to feel like actually doing something once in a while!!? :)

Now that the weather's cooling down, I feel much better.

I wonder where I would be now, with MS, if I hadn't started LDN on 4-12-03??

Happy things are going okie dokie for you, Kelly..:hug:

I'm doing pretty good, thanks for asking!

I've spent a couple of hours the past 3 days painting my foundation. It's a weird color: no one can agree if it's green or brown! But we agree that it looks like a baaaaad diaper!!!!

I've done hours of shopping at Home Depot for our kitchen renovation. Getting ready to sell the house. So WHY didn't we redecorate for ourselves, instead of for the next occupants? :confused:

I guess I'll learn how to tile (backsplash) and install Pergo. I've got so much stuff to do, that I just don't know where to start! The new countertops don't come for 5 weeks, so can't tile just yet.

But, to answer your question: YES YES YES YES!!!! It's nice to feel like doing something once in awhile!!!

BTW, I feel better since I dropped my dose down to 3.0. Not quite so achy in the mornings. And more energy.

Well the spasticity started to hit about 2 weeks ago, just like it does every Sept/Oct. I persevered at 4.5mg for about a week, then dropped down to about 3.5mg this last week. Feeling good now . . . but will go back up in about 2 weeks.

Sounds like everyone is doing ok, which is good. Frank is still overdoing things, I see . . . and it sounds like TwinkleToes is following suit. What am I going to do with you guys/gals? :cool:

Cherie

Cherie, October is my "month", too. I was dx in October and I have some sort of flareup around this time each year.

I'm still taking my 3.0 dosage each night and have been feeling pretty good. Other than the dizziness I've not had too many other sx. My vision, which I thought was going to go double again, has improved.

Since heat bothers me so much you'd think that I'd improve as the weather cools off. Oh well, at least with MS you always have a surprise waiting for you!! :rolleyes: Nothing is ever the same!! :D

Just curious, Kelly . . . when you have these annual "flare-ups", are the symptoms always limited to dizziness/vertigo and eye problems?

This time of the year was always difficult for me (change in weather to cold), but the ONLY "new" symptom that still plagues me every year at the same time (since I've been on LDN) is the spasticity. I can work around that by reducing the LDN for a few weeks, so I am satisfied with that result. It never results in a an all-on attack, like pre-LDN anyway. :)

If heat is your problem, I'm hoping the change to cooler whether will help your symptoms.

I still have plenty of MS-symptoms on a daily basis ~ things are just WAY better with LDN (for me).

Cherie

My sx are usually always either dizziness/balance problems or visual problems. Last October my right hand went numb and it is still numb so I'm not sure if that will ever correct itself or not.

The dizziness is better....actually getting a little better each day...but I know it can take months for it to be completely gone.

I've gotten alot of the use back in my right hand, too. I can write now!! It gets tired quicker and if I use it too much it becomes painful but nothing like it was in the beginning.

As the weather cools off I find that my fatigue sx are greatly relieved. Like you I have plenty of "little" sx but with the addition of LDN they are much reduced! :)

I had to jump in on this discussion of October being "the month." I just recently have developed the balance/lightheadedness/head problems this past week. I also had this develop last year around this time. So far (knock on wood) it hasn't been as bad as last year. I've been on LDN for about 17 weeks now.

My first exacerbation after being diagnosed was the dizziness which was enough to put me in the hospital and steroids.

It must be something about October that causes our flare-ups.

Cherie, that is SO weird that you can predict your spasticity returning at this time every year.

So when you drop down to 3.5, do you alternate days taking 4.5 and 3.0 to achieve that dosage?

Every summer I vow to try to be more active when the weather gets cooler. This year, thanks to LDN, I’m actually doing it. I do over do it once in a while, but I just can’t stop pushing the envelope. Since I am much more ambulatory I have revisited some long-forgotten aches and pains. For example, I had nearly forgotten that I have a bunion that barks at me when I walk a lot, and my knees have been grumbling at me a bit too. I expect that will be less of a problem after my body gets used to the new and more active me.

I had tried LDN about 2 years ago for 3 months and I think I felt worse on it although I wasn't feeling too good when I started it. I'm also on Copaxone and have been the past 9 years. I was taking 3.0 mg. I don't remember right now what months I was taking LDN.

Anyhow, what the point of my post is that I'm thinking of trying again. I got a new script from my neuro when I was there on Wednesday. A friend told me that it can take 9 months to a year to notice the full effect of LDN. I also have an MRI of my full spine ordered finally (my first ever MRI of spine :rolleyes:). I get that done November 5th. I've been having pretty bad mid back pain for awhile. Those of you on LDN for a year or longer, how long was it before you really noticed LDN was helping your symptoms? Thanks in advance for replies.:hug: My thanks button isn't working still since I got a new laptop last month with Vista on it.

Des as for full effect as usual with ms and meds thats an individual thing, but i cleaned myself up of all my other meds before starting LDN and started at 1.5 and got to say, even though i wasn't sure what did it, but it didnt take me long to feel better I am also on C and the last two days I finally injected with out the auto inject, woo hoo, back to my point with the LDN, it may not be for you who knows maybe opiates effect you differently, but I am glad i did it, I see some things are still there but when i was popping 5 or 6 other pills these SX were still there too, so for me a its a cheaper trade off and a lot less carp a dm going in my system

hello everyone how yall doing fine i hope, dont ask no I didnt over do it this week lol cause I was emmm well i gots fluids in my lungs, doing my meds breathing treatments and taking it easy either it breaks in a few days or in I go I have been here so many times before so eventually if it gets real bad I shall go in. Probably why i wasnt on much i would log on and see all these words and it too much for me this week, soooooo, hopefully I can kick it like I said doing all my meds and breathing treatments roids too and plenty of fluids, i love peeing every 37 minutes:Bang-Head: lol sorry newcomers dont fret none i am harmless

happy weekend folks:hug:


peace

((((((((((Frank)))))))))) You take care of yourself please. I hope you get better without having to go IN..:circlelove:

Under 60 or over 80 degrees, and I start having problems.

Cherie

It took me a few years to figure out there was a pattern :rolleyes:, but that's why I always mention it to people on LDN.

I am on liquid LDN, so I can adjust easily. :D

Cherie

Good for you, Marion. I lost 30 lbs the first summer after starting on LDN . . . but it coincided with going off A/D's too. Since it fell off so easy, I don't think I can credit LDN with much of that . . . except that I was probably only able to go off the A/D's because of using it.

I didn't regain enough stamina to cause pain from my bunions :(, but they don't bother me much anyway.

I'm sure the exercise will do you well . . . but slow and steady, k?

Cherie

I got most of my improvement in symptoms almost immediately, but I started on 3.0mg. Many people start out at 1.5mg (you can ask the pharmacy to make it up this way ... 2 * 1.5mg instead of 1 * 3.0mg), as some have found their body adjusts better if they start out slower . . .

Yes, it can take 9 - 12 months to feel the full effects of LDN . . . and not everyone gets symptom management benefit either. Sometimes the symptom benefits are very hard to notice too . . . until you look back to the month or several months prior.

The GOAL of using LDN is to slow progression and reduce (even stop) relapses, and most everyone seems to benefit in this regard. I used to have relapses every 3 months, and I have had one in 3 1/2 yrs (due to an untreated infection). Infection and over-doing things (in a BIG way) can still cause relapses, even on LDN.

I think it helps to stay connected to people who are using LDN, when you are going to try it. There are "tricks of the trade" which can really help with adjusting to this med (like don't "up" it during Sept/Oct, or how to know if the dosage is right for you, or when to try to up it, etc.). I had a friend walk me through the first several months, and that really helped.

Cherie

Hi Frank and Cherie,
Thanks for your responses and for the tips, Cherie. I was part of the LDN Yahoo group for a long time prior to going on it last time and for the whole time I was on it. I did write in to the group a bunch of times with questions etc.. but they weren't very nice when you suggested their drug of choice didn't work for you. Right away it had to be something else causing it, whether the filler not a high enough dose, etc.


Like I said, I was on 3 mg. I did however, start out the first few days @ 1.5 mg and got my LDN from Skip's in 1.5 mg capsules. I think it can't hurt to try it again, right? I have some left from before, but I suppose it has lost it's effectiveness by now. I'll let yous know when I start it and how I'm doing on it. I'm glad to see how many of you are noticing improvements on it. :hug:

It's too bad you had that experience. :(

The points they made, about fillers and compounding pharmacies, etc. are legitimate. I don't buy mine from Skip's cause I am in Canada, but I always recommend that others do because I know he is reliable. It sounds like you did all the right things though . . . but it doesn't work for everyone (and/or not necessarily right away) with symptoms.

I wasn't expecting any improvement in symptoms, to be honest. I had had MS for about 14 yrs, and had had some pretty bad attacks that left a lot of damage . . . so I thought I was a lost cause. I really just went on it because I had nothing to lose, and I was hoping it would slow progression. I was one of the lucky ones, for sure.

One thing I learned, and only recently, is the part about everyone adapting at a different pace. If you go back about 3 or 4 pages on this thread, Sally and I were talking about whether 1.75mg was "enough", and during that research I read that some people might take quite some time to adapt to any increase in dosage above 1.0 mg. I am very sensitive to meds, and only had about 2 weeks of side-effects when I started at 3.0 mg. It seems some people might experience that for several weeks, and I can see how that would be discouraging. :(

That's why I think it might be worthwhile for you to start out at 1.5mg this time, and take it much slower then last. You are on Copaxone anyway, so LDN will just be double-protection, with hopefully some long-term affect on symptoms. No need to rush . . .

I understand that Naltrexone has a short shelf-life, something like one year . . . so I agree you should get a fresh batch.

Good luck, and take it slow (especially if you have trouble with cold/spasticity).

Cherie

Hi Des..:)

I was a member, years ago, of the same group. It's true that there were some gun-ho LDN members there, who made you feel like crap, if you dared to question LDN's Efficacy..:mad:

As Cherie said, the stuff about fillers, peeps were allergic to and not using a proper compounding Pharmacy, were and still can be a real problem.....However their people skills left a lot to be desired.:rolleyes:

I think giving it a new try with your Copaxone is a dandy idea. Give it a little longer, this time and check in here, often. We promise not to holler atcha..:D

:hug:

Frank, how ya doing with the pneumonia?? Any better?

Are you continuing to take your LDN, while Ill? I hope so, unless you are on an opiad for pain.

:hug::hug::hug:

Frank, GET INTO THE HOSPITAL!! Pneumonia is not something to mess around with, especially when we have MS. :mad:

Cherie

Frank, you heard Cherie! Now GIT!

Keep us updated, k? We care about you. :hug: