I'm courious also about the correlation between lesions and sx. I only have 2 small lesions. I have sx all the time, lead legs, TN, the hug, pain in my hands, slow digestion, foot pain. My neuro doesn't understand why I have the pain I do, I guess, because it doesn't correlate to my lesions.

Not everything is related to MS. There could be something else entirely going on that's causing your pain. I have to remind myself not to blame everything on MS. It's hard not to.....because 9 times out of 10 it is because of MS. :rolleyes: But there's always that time it's not.

Hi all-

I have read much of this thread. I do not have MS, but I do have chronic pain from a spinal cord injury two and a half years ago. I recently started on LDN, and am on 1.5mg per night now (started at 0.5mg one week ago). I'm working up to 3mg, or even 4.5, depending on how I feel. I just wanted to say hi and introduce myself. :)

Libby

Hi Libby and welcome to NT! Glad to hear you're trying LDN. Once you work your way up in dose I hope you can report some positive feedback from it. I've been taking it for a couple of years for MS. It's helped considerably with symptom management for me.

Watch This Video!!
 

Watch the video on this site to understand how LDN works!!!

http://www.ldnscience.org/

And yet another interesting study reported recently.....A very interesting and informative read!!

http://beforeitsnews.com/story/1051/...altrexone.html

I know LDN sometimes causes you to dream vividly. But I've been taking it for a few years now and I still get the most ridiculously vivid and sometimes disturbing dreams. They seem so real.....and I remember them clearly and think about them all day. Almost like they really happened.

Had another one early this morning. This time it was about my DH who passed away 10 years ago. It was so real. Just like he was right here. Really makes me feel strange.

Anybody else have these dreams? Most of the time they don't bother me but sometimes they really shake me up.

In two words..."OH YES!!":eek:

anyone here take copaxone and LDN together?

Not me but, many have with pretty good results. I'm remembering this from another forum so I can't remember names.:rolleyes:

Hi daisy,
I too have heard it was okay to take Copaxone and LDN but i stopped Copaxone and started LDN, like I mentioned before. What did your Neuro say? My Neuro gives me my LDN script now.

Kitty-cat I forgot to say that yes, I get very vivid dreams. From the moment I lay my head down until I get up. If I get up for the bathroom, which I always do, I go back to the same dream or a different one.

I have always been a vivid, color dreamer ever since I was a young kid. Or I would have some nightmares too then and now. I think LDN may enhance them more.

If it is working to increase endorphins, and mood, etc., and lower the pain threshold, than it must have to work the brain while sleeping. JMO

I don't care if I dream as long as I wake and know the difference. :hug:

OK, so I'm hearing a few who are becoming disenchanted with their LDN. hmmmmmmmm...

My advise is. if it's hurting you, stop taking it and if it's not, don't!!!

There were times, especially at first, over the past 9 yrs, I felt it wasn't helping enough and thought of stopping. I was encouraged by long term users to continue the LDN, because, it wasn't hurting me and probably helping.

I think we expect too much from such a little pill. but, whether it is helping my MS to be better or not, it IS helping me feel healthier and better. My wounds heal faster, my hair and nails grow longer faster and stronger, my mind is clearer, my sight is better and it gives me an overall feeling of well being.

:grouphug:

I started mine again last night. Just didn't make sense to stop it. I wasn't having any problems. Like my Dad always said......"if it ain't broke don't fix it"! ;)

Right on!! :)

Is Doc S still writing the prescriptions, after he retires? I hope so!!!

Sally, I need to call him and find out. I'll put that on my "to-do" list for tomorrow. I'll let you know what I find out.

If he doesn't prescribe it I don't know where I'll get mine from. :(:confused:

I just had my last wisdom tooth pulled (better late than never, eh?), and it hurt like the dickens the first few days after the extraction. I ended up not taking my LDN for four nights in a row because I used codeine for pain relief, and LDN would render codeine’s pain-relieving properties ineffective. I couldn’t wait to get back on the LDN. It is an important part of my “Beat MS” strategy.

Sally, I'm calling Dr. S today - I promise. I put a BIG note on the refrigerator to remind me! :o

I just called to make an apptment and they told me that the phone appts for LDN will remain the same after he retires.:hug:

I just came here to tell you this when I saw your post..

Was I too late? Did you call? Send me the bill!!:hug:

New Kid on the LDN Block
 

I am waiting, anxiously, for my ldn to arrive from Skipps anyday now but it is probably bogged down with all the X-mas gifts & Holday cards; That's o.k. too 'cause I am a fan of all things that make you feel goood ;) Reading this ldn post has me jazzed since there isn't much else this secondary progressive gal can take; had been on Tysabri for 3 years but I don't believe it did much the final year.

I'll be checking in for advice when I get my pills but just wanted to give a "Howdy" to my future good friends :D

Cheers,
Debra (aka Deb)

Hi Deb and welcome!! :hug:

Welcome Debra, glad to have you in our club. I hope the LDN keeps you feeling as well as it does for me. Not a cure but helps a lot with our symptoms and keeps the big bad MS from progressing too fast....at least for me.

Thanks Kitty & Sally for the welcome.
 

Yes, me no like progression either! Really looking forward to some cool dreams...;)

Question????
 

Well, I've been on ldn for a few weeks now and just bumped up my dosage to 2 pills a night. Everything is fine, of course, but I am wondering WHEN I will feel possible benfits for things like spasticity, etc. Do I need to be at full dosage b4 that begins to happen?

A curious & antsy newbie,
Deb~

So Deb, does that mean you are on 3mg? You should be feeling better on that doseage. Stay on that for awhile and see how you do. Some people stay on 3mg and some feel better on 4.5mg. Its an individual thing.

Good luck!!:)

Thinking of switching to ldn
 

I've been researching ldn cause everything else is so expensive and seem to have drastic side effects at least significant enough to be listed. I'm wondering if anyone has experienced any. I can't take the shots and can't afford Gilenya with a legal occupation.:D

Yes, Sally, I am at 3mg and starting to feel more tired than usual! My thinking is that my body is getting used to the higher dosage and it will even out soon. But that is just MY thinking and these days thay can NEVER be trusted ;) Deb~

Oooh, how I love this site: Why, you ask? Because I was reading old posts and discovered how some folks were feeling nauseus/tired and how that related to their low blood sugar.
Since one of my dogs is a diabetic, I used her glucometer to give myself a blood test and it was a tad low (73). So...I finished the box of Christmas candy (2 pieces) and I feel better. So much for New Years resolutions :D

Deb~

Need advice!
 

Hey there, Sally & crew: I am thinking of goiong back down to 1 pill/day as I had no side effectsfrom just one pill. My husband and I have a trip planned to Mexico in less than 2 weeks and I'll need all my energy possible for the journey.

Would there be anything negative to reducing the dosage until after our vacation? When we get back, I will be able to stick out whatever side effects ldn has to give me until they subside :cool: Thanks, Deb~

Should hurt or help at 1.5mg. That is just a starter amount. Have a nice vacation..:)

Hola! I am back from Mexico, I have been back for awhile but I am having a hack of a time getting to the SECOND pill! Once back home, I amped up the dosage to 1.5 pills and WOW! The pain & stifness throughout my neck/shoulders was incredible but I stuck it out, eventually getting to 2 full pills/day with only a minor queezy feeling but NO pain :)

I plan on staying on just 2 pills/day for at least 3 weeks or more. Do I need to go to 3 pills/day in order to feel any benefit from the drug? I am so happy to have no side effects that I forgot the ldn is supposed to HELP me!I also plan on calling Dr. S. at the end of 3 weeks on 2 pills/day to see what he advises but just was curious what the users think (Sally ?). Gracias y adios! Deb~

Well. I guess my LDN run here will be short but sweet; seems like most of the users just aren't that chatty these days and I'll have to muddle through on my own. Still hoping ldn will help me but after 27 years + w/ MS, I have little expectation. So long...Deb~

I started out with 1.5 mg and worked my way up to 4.5 mg. I think I took the 1.5 dosage for a week, then bumped it up to 3.0 for a week, then 4.5 and stayed with the 4.5 mg. That's what I take now.

I think most of the MSer's are on the main MS forum or The Stumble Inn. Even if we are taking LDN we navigate all over the place. You'll find some LDN discussions on the main MS forum as well.
.

I am so sorry for not getting back to you sooner, Deb. Please know that this is not a chat room, so we do have time to respond. But still, I understand your disapointment.

LDN is not a miracle worker or a cure, but, if you're lucky, it does seem to make things a bit calmer and it just helps me to feel better (less sick) and stronger. It completely took my dizzyness away and made my MS fatigue a little better. I seem to heal faster, my hair and nails grow faster and stronger. It didn't take my MS away, but does make it a bit easier to endure. Some of that may be placibo, but thay's ok too.:)

Stay with it. The longer you're on it the better you feel. Keep those endorphines working for you.:hug:

Ldn
 

I've been on LDN since last Spring. At first it seemed it was helping, but after a while, all seemed to revert to my previous state. Had 2 relapses since then and getting ready to start Gilenya. Too many bad injection site reactions with Rebif and Copaxone. I was really hopeful that it would work, too.

Linda

Sorry Linda..:( Welcome to NeuroTalk.

I took LDN for 9 months about a year ago or more. Now my Neuro is allowing me to go on it again.
I can't remember what it cost....can anyone clue me in for a 90 supply of 3mg shipped from Skip's Pharmacy.
Thanks guys!!

About 28.00 delivered for 30 days. About 72.00 delivered for 90 days. (I paid 96.00 for 120 days.)

thanks Sally! I was thinking it was around $60 for 3 months. I know this probably sounds silly, but that still seems like a lot of money. I was on tysabri, gilenya and copaxone.....and I qualified for NO money out of my pocket for a 3.
Wish there was some assistance for LDN too.