Cherie that was a sad, but inspirational story. Thanks for sharing it. :)

Update on me FWIW. It seems my BP has headed back down to normal, since I reinstituted half of my water pill I take for BP. I had stopped it, as per the doctor, since I went off of salt, as completely as I could manage to do. I must have been retaining fluid which raised my BP. I had to ask if LDN could do that, raise your BP that is.

So all is back to normal. Yes Cherie, I check my BP often. I also had very low BP all my life. Then out of the blue it went up like this time did.

The MS Neuro thought it was a lesion in the Autonomic Nervous System. I am low in my normal body temperature and heart rate, and a few other areas the A.N. system controls. It seems to be messing with me for years.:rolleyes:

Today, well last night, I increased my dosage of LDN to 3. mg from the original 1.5 mg starting dosage from 9 days ago. I had the same reaction at night. I would wake up for a few seconds, look at the clock, and fall right back to sleep with very heavy eyelids.

I could not stay awake if I wanted to. It happened every hour, until I woke up 9 hours later, which is my norm. Very few vivid dreams I remember, but I like colorful dreams that are not scary. ;)

This quick wakefulness stopped after a few days on the 1.5 mg. It will probably stop in a few days as I adjust to the higher dosage.
Lady

Phew, that's good news . . . although I really wasn't too convinced it was the LDN, mostly because I would have thought I'd have heard that possibility from "someone" through the years. But, I suppose there's always a first.

I don't take any other meds, except the occasional Naproxen, and I always wonder how people can figure out which drug is causing what. I was so nervous when I first went on LDN, I didn't even try adjusting my A/D for a year. :p I was able to go off then though. :)

Sorry to hear you wrestling with the Autonomic Nervous System from the MS.:( I have very low blood pressure, but I don't think it's related to the MS. I have to eat a lot of salt sometimes though, to keep things in check.

The sleeplessness and dreams should level off, as you said. I don't need near as much sleep as I used to pre-LDN, but I do have to have my afternoon nap! You are brave to make the change on Xmas Eve. Hope the lack of sleep didn't interfere with your day too much.

Sounds like everything is going pretty smoothly, which is GREAT for those of us who have trouble with meds.

Cherie

I had made up my mind when I started LDN that I would take the higher dosage on the tenth capsule/s. I checked the calendar because I wanted it to be 2 am on Christmas Eve, which is really Christmas Day. :)

My DH and I, had no plans to go out that day, just the two of us and a roast. :)

If a filler or drug were to bother me, it would usually show up in the first week, IMO.

Cherie I remember my blood pressure being so low I had to increase my salt intake also. A bag of potatoes chips usually fixed the problem with a bottle of Pepsi. They say you crave what your body needs. ;) Salt free potatoes chips just don't cut it. So I am enjoying my cup of coffee and homemade-salt-free chocolate chip cookies.
I hope everyone had a great Holiday. Cherie, was it Boxing Day for you besides?
Lady

.

I agree that any serious problem with a med would likely show within the first week (at least that's my personal experience) .... but when we are "super" sensitive to meds, you always want to keep a close eye on things.

I did ok on an A/D, for several weeks, even a few years on one occasion . . . but it wasn't until I went off that I realized that many of my symptoms were actually caused by the A/D. :eek:

We're kinda' "oldies" in this game though, so hopefully you have become very in-tune with your body (like I have over the years) ;).

My friend used this fake salt (can't remember what it was called), on all her food. In fact, that's all she had in her house so that she didn't get tempted. I got used to eating it there after a while, and just kept a bag of pretzels hidden for when I needed the salt . . .

Yes, it was still a holiday yesterday, but the stores were open. I got some great deals! :D

How are you doing on 3.0 mg now? Do you notice any improvements yet?

Cherie

I tried one AD in my life Cherie. It was for pain, burning legs and feet. It was Cymbalta. I used a low dose for one week. I was to increase it if I felt pain relief. This was this year, btw in February.

In one week my eyes were completely dilated. It looked kind of pretty, since they are usually constricted with very small pupils. I have always been light sensitive. The tears roll down in the sunlight. My make-up hates that. :cool:

My MS Neuro said, stop at once and don't use them again. I believe it is a SSRI. I think my Serotonin doesn't like being messed with either.:rolleyes: I truly hope my Endorphins don't mind the LDN. ;)

I am going to take my 4th dose of 3.0 mg soon. It is early here. I don't go to bed until late, like when the cows come home or the rooster wakes up. (joke):D Skip said I could take it at 3 am if that is when I go to bed. Just take it a little before bedtime.

As for noticing any difference on the increased dosage, perhaps in my balance. It may be steadier. I haven't been really outside walking to tell, but I haven't lost my balance at home lately, which usually leads to me catching myself or falling over. I also may laugh more than I usually do, or so my DH says. I think he's keeping a secret journal. Lol

I have a weird, dry, sense of humor. Not much makes me laugh, chuckle or snort. So if I am more cheerful, then that is a good thing. The holidays have been very stressful, and a close member of my family died yesterday. :(
So this should put the LDN to a test for sure. :)

So no bad reactions, TG and some good signs. Only more time will tell. I woke up less often last night, but had some cool, wild dreams.
Thanks for asking,
Lady

I'm so sorry about your loss. The holidays add their own brand of stress but when things like this happen, especially at the holiday time, it just really takes its toll on us. I hope the LDN continues to be helpful to you. It's been a Godsend for me. :hug:

The A/D I used for a few years was Celexa, and it was originally rx'd for fatigue (that they thought might be caused by depression, even though I tested "not clinically depressed" :rolleyes:). It didn't work for the fatigue BUT it really helped the spasticity pain!! It was still bad, but it took the edge off for me.

When I started on LDN, the spasticity pain let up entirely and immediately. :) I have had it since, and it gets worse with the cold weather, but it is NOTHING like it was for two years prior to going on LDN. :eek:

Since I was only using the A/D for pain, and it wasn't working for fatigue, I went off of it a year after starting on LDN. It was hard for me to get off (took three attempts), but when I did, my fatigue LIFTED! I am still pretty lazy most of the day, but I don't need near as much sleep as I used to (with the A/D) and some other symptoms went away too. I "dropped" 35lbs quickly, the ringing stopped in my ears, and I can't remember what else. :p

Glad to hear that maybe your balance is improving. Some of my symptoms improved immediately, some did over 9 - 12 months, and some never did. It was more than I allowed myself to hope for though.

Cherie

It's worth trying, Kelly.

I know that LDN helps/hinders (:p) the amount of sleep I require, but it fluctuates too. At PMS time, I hardly sleep at all . . . and other times I sleep 8 hrs at night and then 2 - 3 in the afternoon too. :cool:

I have been on 4.5mg consistently (except a few weeks at the start of every cold season) for over 3 yrs now, and even though I can say "overall" that I need much less sleep than I used to pre-LDN, it definitely fluctuates.

It may be hard to "test" the difference in one attempt, because maybe you just fluctuate as well. If you have no problem otherwise going up and down, I'd suggest testing it a few times. :confused:

It could just be the stress, excitement and sometimes emotional baggage ;) that comes with the season, but you won't know until you test it, right?

Cherie

Yep Kelly, I had to go back to 3mg for awhile for the same reason.

:hug:

As soon as my LDN finally gets here I'm going to start @ 1.5 mg. They for some reason had wrong credit card numbers for me even though they had called and I gave them the correct ones a week and a half ago ( and I sent my script in over 2 weeks ago). Well, they have the correct ones for sure now and in a few days hopefully it'll be here. lol Can you tell I'm an impatient person? Will keep you all updated how I do.

Great news Desinie! I won't feel like the only newbie to LDN. I know you tried it before, I think you said that, but maybe we can help each other, or compare notes or something, ya think?:)

We have the pro's to help us too.
I'll listen to whatever anyone has to say. I'm easy.:D
Lady

I only took 3 mg last night and finally slept!! Not all night....I never do....but definitely better than I have been. I don't think the 4.5 mg dosage is for me. Think I'll just stick with what works. :rolleyes:

:Wave-Hello: Still here...just swamped! With the kids on break and finishing the unpacking, it has been busy. We are throwing a little open house on Wednesday night to thank all of the people that helped us move. It's not an easy task to move a family of seven. :rolleyes:

This basically sums up the mess we are in with my husband's construction business going bankrupt: "When God closes a door, He opens another"

I believe that this is all for our good and we will be able to see all of the reasons why as time goes on. We had a wonderful, happy Christmas. The kids were all smiles...thank Heaven for Grandparents! On the bright side - it is much easier to do Christmas when you don't have to worry about shopping! ;)

I too noticed that there was an adjustment period for sleeping with each dose of the LDN. When I started it at 1.5mg in November...it took about 4 nights, same thing when I started the 3.0mg two weeks after that. I am going to bump it to 4.5 this weekend. I am expecting another adjustment period while I get used to it.

I have read the thread and caught myself up. I was very excited to read the story that Cherie posted. I tell everyone I meet about LDN (I'm a natural networker), it's been my best Christmas gift EVER! :D

HAPPY NEW YEAR! :Dancing-Chilli:

Sorry to hear about the death in your family :hug:, and I hope the stress isn't too much on top of everything else during the season. I get worn out at Xmas time every year, for sure, but at least I CAN accomplish everything that needs to get done. That's much better then I was for years . . . so I'll take it. :)

As far as being more cheerful, this is one improvement that many seem to mention. I've run into a couple of people over the years, both with SPMS, who have tried LDN and their outlook seemed to improve substantially. In both cases they didn't see that LDN was helping (their symptoms) so eventually they went off. I saw their disposition go downhill FAST, and tried to tell them so :eek:. . . but they had a bad disposition :p and weren't going to listen at that point. :eek: :(

LDN has improved my attitude a lot, at least compared to when I was on A/D's and doing very poorly with the MS. I don't know if it was the symptom improvements that made the difference, or if it just had some sort of positive effect on my endorphins, but I am (generally) more cheerful, no matter what the obstacles.

Other's have mentioned how they had trouble getting started through Skips, initially, but I've never heard any complaints once they get the ball rolling. Hopefully you'll see the LDN soon, and start the New Year off in a good way. :)

3.0 is sufficient Kelly, so if that's what works best for you, good!

That's why I really like the liquid; I can adjust it in very small increments easily.

Glad you had a better sleep. :)

Well you survived well, all things considered, Brenda. What a whole lot you have had on your plate!!

What a wonderful attitude you have towards it all too. I know the adjustments you are making must be VERY difficult, but you are right that when one door closes, another opens!

Plan for some down time after all the festivities, won't you? :hug:

Cherie

That's a deal,Lady! :hug: Yes, I did try it before in 2005, but started right off at 3 mg. It was probably too high according to Skip.

It's so nice to hear you all doing okie dokie on LDN..:grouphug: Finding your dose and comfort zone is all part of the process, so hang in there.:)

I'm missing hearing from Frank and Rachael/Twink...Are you guys doing ok or not so good?? Please report in and let us know..:hug::hug:

I still love my LDN.....smooches!

My LDN came today. Going to start out @ 1.5 mg tonight. Wanted you all to know.

Good luck tonight, D! :)

Cherie

Desinie good luck. I hope you sleep well and get good results this time around. :) The cheerleaders are here for us too.
Rah! Rah! :grouphug:
Lady

Thanks Sally, Cherie, Desinie and Kitty for the information. I can't make the "THANKS" for this, button work. Is there a trick to it?;) Works sometimes. Hmm

Brenda, I hope your DH has plenty of work in your new area. May each Christmas be brighter for you and your family. :)
Yes, Grandparents are great. Tee hee
Lady

Thanks, Lady! I slept really good last night.

A little while back the Thanks button wasn't working for me either. I thought it was related to getting a new laptop with Vista on it, but I really don't know. It works fine for me now. When it wasn't working, it was hit or miss.

i had a discussion/argument with a lady at my mri appointment tuesday. this woman was one of the 'MS means more smiles' set and very anti LDN. we had gotten talking about our meds and whooa boy. she takes a laundry list of drugs every day, just to feel crappy. but when i told her i only take LDN, by the look on her face you'd think i had just told her i had a nun tied up in my basement and was planning to sell her on ebay.
her big question was how could i take a drug for my ms that had no clinical evidence it would work. in her words i may as well take chicklettes. and this point has come up on here before in respect to clinical trials and all.and we know its probly never going to happen. im not saying its a conspiracy or anything. the pharmacutical industy is just that an industry. with investors and share holders just like any other. and just like any other they want a return on thier money too. so i dont take that personal.
but when ive got ,litterally, thousands of people telling me this works and with minnimal side effects to boot compared to a government sanctioned study of hundreds.

i'll go with the word of the thousands every time.

:ROTFLMAO:

Great analogy!

There weren't that many on LDN when I started, but there was one young boy (13 yrs when he got MS) that convinced me of its capability.

Like any drug, it seems to work well for some, and perhaps less for others . . . but it is a viable CHOICE.

Cherie

you know its a viable choice......i know its a viable choice.......i think pretty much everyone who reads this thread knows (or is atleast open to learning about it) of its viability.
the woman i had words with the other day was hard core dead set against the idea.
it really was kinda funny how quickly she went from being annoyingly chipper and cheerful to scolding me for my medical heresy by taking a non fda indicated medicine for ms

I never never quite undersood that....why some people were so, vehemently, against using LDN?????

I have to say, though, that some of those peeps are now on LDN, and loving it..:D

FluteMaker, Sally and Cherie. I must admit I was one of the naysayers when I first heard of LDN. In my mindset, I could not imagine a drug used so way off-label being of any use to PWMS. Then as I slowing starting getting drugs off-label from my MS Specialist in NYC years ago, like Neurontin (epilepsy drug), Provigil (Narcolepsy drug), Lyrica for PW diabetic PN and Fibro, etc. I did some soul searching.:confused:

Like what the heck am I taking all this crapola drug mix for? It seemed to work for a while, some went Generic and added my favorite, Mannitol to it, allergic to that. So I gave up all these drugs slowly until I was on nothing, including BP water pill.;) You get fed up, ya know? Almost dx'd 30 years with this MonSter. Started with Cortisone injections in the head at 16 btw. But I am older than that. Symptom relief.

Now, my local Neurologist wanted me on something. She mentioned a few, one being "T". She only prescribes approved DMD's for MS. That is her prerogative.

She said she was thinking of a drug to discuss with me and it turned out to be LDN. As you know she made my PCP write the script. She was in to it, and so I began reading as much as I could about it. I didn't know if it would help, but saw no reason for it to hurt me. It has a better track record for S.E. than the others I have tried that were approved.

I am tried of suffering S.E.'s from all these other drugs, so I am praying every night that I am a responder to LDN.:)

I am sure I am not the only one who thought LDN an odd drug of choice. When I am asked what I am taking for MS, I say "A drug currently being used for MS of all types, which has to be tried, to see if it will work for me". Somehow they don't ask what it is, what is does, or how it works. Hmm

These are the same people who don't know that PWMS jab themselves with needles daily or weekly, or so, either. So I just drop the topic.:rolleyes:
I am a honest person so I will be the first to admit, I never thought I would try an alternative medication. I am glad I did.:)
Lady

I hope LDN helps you to live a little better with MS too, Lady..:hug:

I usually find that when I'm enthusiastic about something...others don't rain on my parade. Not always, but most of the time. I really don't care what people think. Once you have your results on LDN...that is YOUR TRUTH...and nobody can take that away from you. Share YOUR story, YOUR results...YOUR truth.

For example: I share it this way...

"I am on a new medication for my MS. It's nothing short of a miracle for me. I have energy, the brain fog has lifted and the little annoying symptoms have all but disappeared. I feel wonderful! The most exciting part is that there are virtually no side effects and it only costs around $40/month verses the $2000/month I WAS paying. It's a little non-toxic pill. NO MORE SHOTS! I just take it at night before I go to bed and I feel fantastic the next day."

This is my truth...and like I said, it can't be taken away from me. ;)

If they are familiar with LDN and perhaps negative...I usually tell them that the anecdotal evidence is far more convincing to me than the standard 100-200 people trialed for the mainstream drugs. And that MY results are convincing enough for me.

I took the day off yesterday...you would be proud of me Cherie. :) Lot's of sleep. This weekend I bump my dose to 4.5mg. Skip's pharmacy said that the trick is to get to bed within 10 minutes of taking it to sleep well. That way, you fall asleep before it hits your system.

Off to play with the kids...:D

Good for you!! :hug: Rest is very important too, even though it is tempting to try to push things to the limit.

You've done so well, with the move, etc. How great for you! :)

I didn't know that, about taking it right before you go to sleep. :confused: I happen to do that anyway (it's the last thing I do before I brush my teeth), but that was more good luck then good planning. ;)

Cherie

It's ok to be skeptical, and I don't blame people if they feel that way. It does sound too good to be true, especially for people who've tried so many mainstream options that haven't worked. Who'd have thunk? :p

All I know for sure is that it works for ME. :)

Cherie

I am just popping in to say hi from the road. We spent some time in Jamaica, and it was waaaay to hot for me! In spite of it, I didn’t have any symptoms rear their ugly head. Even though I don’t think it was much over 85F, I absolutely poured with sweat all the time we were over there (except when in the rental car with air conditioning). We stayed with friends who live there, and they didn’t have air conditioning. I guess they are used to it, and see no need for it.

So now we are driving to San Diego, where we will fly to Hawaii. I haven’t had to use my power chair at all, and only used my rollator in the airport. I have decided not to take the power chair to Hawaii at all; only the rollator. I am feeling stronger than I have felt in twenty years, so it really is the best time ever for this trip. The improvement in my mobility since I started the LDN is nothing short of spectacular. Don’t get me wrong. It isn’t like I don’t have MS. But it is like having a repreve of sorts from the worst of the symptoms, and in general I am stronger on most days.

The following picture was taken at Juno Beach, Florida.

http://i101.photobucket.com/albums/m...obucketToo.jpg

Marion,
I'm glad you're getting a break from the worst symptoms. You sound like you're having a great time. Enjoy Hawaii!

That is inspirational news Marion. Nice to meet you. I love the picture of Florida.:)

I am glad the LDN is working so well for you. Taking such a long plane/road trip sounds like fun. The heat in Jamaica probably would do me in. I don't sweat. It is a curse. I used to, but not anymore. Even when I feel the LDN give me a slight flush I can't release the heat. Time should get rid of that flush, it is the new drug in me, to my system.

If I stay awake a bit after taking the LDN, I don't get the flush. Strange. :eek: I go to bed at 3 am though. Skip said that was okay, as long as I take it at my bedtime or a little before.

I do wake often, but go right back to sleep in seconds. Mostly because of changing positions or BR breaks. I get 10 hours of sleep at night and don't have to nap.:rolleyes: Like a Vampires hours though!:D

Brenda it is wonderful how much you have benefited from the LDN. I am a newbie to it, so I have to give it a chance. I hope I can praise it like most of you pro's do.:)

How are you doing Desinie, since you started the LDN?
0357 did you start it?
Anyone else have any comments for the newbie's on here?
Lady

Hi Lady,
I'm doing ok. Nothing much to report. I've been lightheaded a bit today, but don't attribute it to the LDN. Tonight's my 5th night on 1.5 mg. I'm optimistic , but cautiously so. I'll give it a better try this time. I'm on Copaxone too so, I feel somewhat doubly protected I guess lol I'm not sure how long I'll stay on 1.5 mg. I'm thinking maybe a month or so. What dose are you taking, Lady and how long now?

Desinie I started on 1.5 mg on 12-15-08. Ten days later on Christmas Eve..late, so really the 25th, I upped it to 3.0 mg.

I have continued to take the two capsules of 1.5 mg each ever since. Now this is hardly more than a week on the 3.0 mg, so I can't make any claims yet to it's effectiveness. I see some positives, but want to evaluate the lack of holiday stress, and my sometimes annoying kids, on this cheerfulness I feel. ;)

I have many issues (symptoms) that need to be tested for a longer period. I believe that the LDN will be helpful. Something is happening, but I can't put my finger on it right now. I will sum it up when I am more relaxed, some gifts are brought back to the stores, and I am more relaxed.

I will do my own little clinical trial, on just me.:hug: I am keeping a mini journal because I know my Neuro and PCP will ask me how I am feeling. If I notice something earth shaking good, I will post it. It is really too soon to tell, IMO. Also I have a few Auto-Immune diseases besides MS. Lucky me. :cool:

You are on Copaxone, so take time before you up your dosage. Get used to it first. That's what I would do. But that's just my opinion.
Lady

How long have you been on LDN now, Marion . . . (if you happen to get this message)? :p You really have had some great improvements, haven't you? I can't recall if your improvements were fairly sudden after starting, or if it took some time before you no longer needed the wheelchair, etc. . .?

Like you said, "we still have MS", and it seems that MonSter will rear its ugly head to remind us if we get too cocky. :rolleyes: :p I'm going on 4 yrs now, and I am still hesitant to give LDN all the credit it is due (in my case).

I agree Desinie . . . you have double protection now. If I didn't have such difficulty with drugs, and almost entirely spinal lesions (this far into the disease process), I think I would be on Copaxone too. Additionally, that is. :D

Lady, you know your progression rate over the years, and perhaps this is where you might ultimately see the most benefit. I was in a bad way, and going downhill FAST, especially in the last two years before LDN. More then anything I wanted to SLOW the beast!! :eek: I got more then I bargained (and paid ;)) for, but I realize I was very fortunate in that regard.

As far as that "flush" or "rush", does it last about 30 min? I had that, but it stopped after the first several nights of a new dosage. Glad you've found the trick for you is to stay up for a little bit.

Also, did you always wake during the night (morning ;))? You said you sleep about 10 hrs, but wake often for bathroom, etc. breaks. Is this new?

LDN seems to work somewhat differently for everyone (guess that's true for many drugs), but as long as you are open to adjusting around the initial side-effects, it pays off most times.

Cherie

Lady...thanks for calling me a pro...I just started LDN the week before Thanksgiving. ;) I think that makes me still a newbie like you. :D

Starting the 4.5mg tonight...I am soooo inspired by Marion's post.

MS was going along nice and slow, having my kids, working and getting steroids, as needed. In the de-Nile River. My Neuro said I might stay RRMS with slow progression. Yeah right! I so believed him.

There were no MRI's in 1977 when they first tested me, or any meds but symptom treatment for my odd tremor, myoclonic jerks and myoclonic seizures, body buzzing had me daffy.

Then BAM! The exacerbations got closer and lasted longer. I was progressing quickly in 1999-2000. One attack overlapped the other. I had 4 a year. Started Avonex for one year, no help then Copaxone for 3 1/2 years. Went down to two attacks a year. I thought that was great.

I did do steroids with the "C" when needed. I have brain lesions, one brainstem and one C-2 lesion. One lesion is only seen on a certain slice positioning of the MRI on the spine, at a lower level.

Then all other meds just stopped helping me. So I gave up all meds. Had to give up my NYC MS Specialist too. I moved. I can understand why this new Neuro is reluctant to prescribe much for me.

I guess we took the same ride Cherie, the fast roller coaster from he!!

The flush/rush is okay, but I like to have it before I lay down. It is a weird feeling, with a new drug. I have always had to get up for BR breaks. I drink a lot of fluids, coffee and water, day and night. I must have a tiny bladder but I have frequency, hesitation, and retention too, if I don't pay attention to my needs. Neurogenic, oh the fun, NOT!
Lady (I find I type and talk too much on LDN.) You have my life story now.:)

Brenda, I tried to post to you but it wouldn't let me. Gremlins in cyberspace. :) I hope your increase to the 4.5 dosage goes well with you. I wish you lots of good luck.
Lady

I've tried several times to bump up to 4.5 but just have too much spasticity at that dose. Plus, I can't sleep. So....it looks like 3.0 mg is the optimal dose for me.

I'm pretty much staying the same.....no big changes for me. I love the way the LDN helps my emotional well being. Calm is good! :) I have to make an appointment with the doc next week for a phone consultation so I can refill my rx. I'm thinking of asking my PCP is he will prescribe it.....that would save me the consultation expense. But if not I will continue to do the phone appointments. Nothing will stop me from staying on LDN....it's a miracle drug for me!

here kitty kitty kitty........ have you checked with crytals list to see if there are any known LDN friendly doctors in your area?i know there are a couple down in florida, or maybe skips could check thier records of who RX's LDN and see if they got one somewhere around you