GREAT news, Frank!! Would that be 5 other drugs you've dropped now, or is Provigil the 4th one?

I'm really glad to hear you are learning to pace yourself though . . . cook, rock a little . . . cook . . . water the plants. That's EXACTLY the way to do it!!!

Cherie

Glad to hear the sleep might be leveling off a little for you, TT. I still wake up several times a night, but I am a very light sleeper anyway. Between my paperman/the dog, my kids, my neighbors, I am lucky to get more then a few straight hours of sleep at night. The good news is that I do always fall right back asleep too, whereas pre-LDN, once I was awake I was up for hours (even if I was exhausted).

If the dizziness is caused by Naltrexone, I would think that will level off in a few weeks. The side-effects listed for Naltrexone are varied, but we are on such a small dosage, there shouldn't be anything that is very troublesome or lasting. Druggies are taking 50 mg - 150 mg, and the original trials were at 300 mg . . . so anything listed is definitely far beyond what we are likely to experience.

Cherie

Thanks, Lady Express. Your response gives me some hope since I've only been on LDN coming up on 3 months.

I tried Provigil for fatigue, but it made me dizzy even on 50 mg dose. I might try it again.

klonopin, tegretol, lyrica and provigil, and my pain med, darvocets, am tempted to stop my injection too, but am waiting to see what nero the neuro says after those mri's, I ahve a feeling i will be stopping the copaxone after these mri's my neuro has been leaning that way for a few months now, we talked about whether it was even working

I hope this finds everyong doing well :hug:

I can relate, Cherie. I'm a light sleeper and just the cat walking by my bed (on the carpet) can wake me up. Combine that with my two boys who seem to get up to use the restroom more than I do at night and I'm awakened several times!

But, like you, I can now go right back to sleep whereas before I was awake for hours.

And, I'm finding I don't need my daily nap anymore. I do go to bed relatively early....9-10 PM. But I get up early, too...5-6 AM. Guess I just don't need a lot of sleep.

I've noticed since starting LDN that my fatigue has been greatly reduced. At the beginning my leg pain (right leg) went away but it's back again today. Nothing terrible...just annoying more than anything. I'm hoping that the longer I take it the better my right hand will get - it's been numb since October of last year. I'm thinking it might be permanent but you never know.

I'm still a little tipsy...especially when walking outside or in a store with high ceilings and flourescent lighting.

But, I feel better. Physically and emotionally. And if I get nothing else from LDN but a slowing of the progression of this disease I'll be satisfied. :)

hehe, Frank: Nero the Neuro. :D

I had quite a morning. Got up at 5:00 to take my thyroid and AD pills and went back to bed. Next time I woke up the room was spinning! I actually started getting sick to my stomach. I had to lay completely still with my face pointed at the ceiling in order to get it to stop. Ugh.

Here is it 11:30 and I'm still in my PJs cuz I just got up. I still can't make any sudden head movements or I'm in trouble.

I did experience some dizziness yesterday at work, so cut back my LDN dose to 1.5 mg. (been on 3 mg. for 1 week). I work again tomorrow, so will maintain the lower dose.

Let's see...
1) They don't really know if the thyroid issue is connected to MS or not..Since it seems to be prevalent among MS'rs, I wouldn't be surprised.
2) Balance issues are MS. My thyroid was under control with meds for 3 years when it decided it wasn't getting enough attention.
3) They are not saying LDN is the cause of anything. They know the thyroid issue was pre-existing.
4) Enhancing lesions was a shocker for me, too (as well as my neuro, I think). I do not have relapses at all, that's what's so weird. My neuro said it could be a "silent" relapse, that it's not common but possible. He is sticking with PPMS dx for now..
5) I have had spinal lesions (C3-C4), but nothing new. Never really had any kind of "attack", just slow, steady progression..
Like I said, LDN has been very helpfull with some symptoms. I'm happy about that because I'm unable to take a lot of the stronger drugs for things like pain, bladder control, etc..

Thanks, Polar.

Sorry if I was being too nosey, I just like to understand when I hear a slightly different story (then most of the rest). I too have C-spine lesions. :(

Cherie

Frank, your neurologist is likely to be very pleasantly surprised by how well you are doing, don't you think?

If I were in your position, and had already adapted to Copaxone, I think I'd stay on it. If I considered any other option, I'd probably choose to cut it to every other day instead of daily.

I just like the idea of double protection, if you are in a position to continue on this way.

JMHO.

Cherie

No problem..Thoughts go thru my head and I end up typing the Reader's Digest version assuming everybody will know what I was thinking when I wrote it...or something like that.:o

Polar cant they do a mri to see if a lesion is in an area that is damging the tyroid? that was the reason they just did extensive MRI's on me to see if there is a lesion they have missed in an area that might explaing the heart chest pains, at first I thought this was silly but a few on here said they also had mris for same reason and lesion were located. so who knows,,,,,

Curious what are you all taking for Pain, and i dont mean over the counter, my doc hemmed at scriping me any pain, because of LDN, aspirin just dont cut it

hope eveyone has a nice day:hug:

Aleve is pretty good, Frank. I don't have a lot of pain so Asprin is usually fine for me, but on occasion I have had to take an Aleve or two....Deffinately better than Asprin.

:hug:

I'll have to ask my doctor about the relation of MS and thyroid problems. It never occurred to me that there was a connection between the two. I take Levothyroxine for my thyroid. I just had to increase the dose last month. Gotta go back in December and have my blood checked again.

Frank, I love Aleve. It seems to work better for me than just plain Tylenol. I haven't had to take too much in the way of pain relievers since taking LDN, though. That may change so I do keep Aleve in the house just in case.

OTC Aleve is the same thing as rx Naproxen, but Naproxen is usually rx'd at a much higher dosage. Basically I take 1000 mg of Aleve though, and am monitored by my doctor at that level. I buy it as a rx because it's free then.

It can be hard/dangerous on/for your stomach, especially if you take it longer then a week or so, but I've never had any problem what-so-ever.

Cherie

Good reminder, Polar . . . that we are not supposed to take any of those drugs on LDN anyway (codeine, narcotics).

Naproxen is ok though.

Cherie

Codeine makes me sick too...Ugh!!

Me three!

When I take Codeine, I have to take Gravol to keep everything down. When I take Gravol, I have to take a heartburn/indigestion pill to tame that . . . and so on, and so on . . .

Codeine was an easy drug for me to avoid when I got on LDN. :D

Cherie

I'm primarily on dailystrength nowadays, I have my own LDN group, http://dailystrength.org/groups/ldn and keep a SNIPS archive group there too http://dailystrength.org/groups/daily-snips-archives

My dad is on LDN 528 days and doing AWESOME, 1969 for me.

Just got back from 7 Bluegrass Festivals event weeks since June.

Follow up MRI after 9 months on LDN, sorry I didn't catch up in the thread I only have a minute but wanted to make sure you guys saw this post.

http://neurotalk.psychcentral.com/sh...105#post362105

That's wonderful news, SL!! Congratulations! :)

Question Regarding Spasticity
 

I've been on the 3.0 dosage now for 4 days. I've noticed an increase in spasticity in my right leg. Should I just tough it out and wait for it to pass or do you think I should reduce my dosage back to 1.5? I hate to go back to a lower dose because it seems to be helping other aspects of my MS.

Hi Larry! Thank you for the link to the website. I checked it out and it's very informative.

What wonderful news, SL. I'm very happy for you.

Symptoms like this might stir up for a few weeks, Kelly, but I'd give it a few weeks to see what happens.

When I happened to try to move up the first time, in late Sept (3.0 mg to 4.5 mg), I couldn't do it because of the recent change in weather. I waited about a month and tried again, with no problem.

I've also mentioned that I have to drop down from 4.5mg to about 3.75mg at this time of year, EVERY year, because the weather starts to turn colder and my spasticity acts up anyway. I haven't dropped down yet, but will probably have to in the next few weeks. Once my body adapts to cold, I can go back up.

I'm thinking this is likely just transient, and one of the initial side-effects. If it's not too bad, then I'd suggest to keep plugging away at 3.0mg to see if it levels off. If it doesn't, you could drop down for a few weeks, wait till you've adapted to the weather, and try again.

Cherie

Well that's cool! :)

My neuro doesn't even bother with MRIs any more. :p

No doubt your neuro knows what you are up to, but is still trying to play the denial game. My (ex) neuro did that for a year too, and then he started rxing it to anyone who asked for it.

Cherie

Thanks, Cherie. It's not bad and subsides after I've been up for a while so I think I'll just wait it out and continue with the dosage I'm on now (3.0). It's usually just first thing in the morning and once I move around a bit I loosen up.

The extra energy I have is wonderful. It's so nice just to feel good again...:)

Thanks for putting the link here, to your wonderful LDN success story. Congrats..:hug::hug::hug:

Larry, I know you must getting tired of repeating it, but, please tell us a little more about, how you are doing, at this point in your LDN experience.

We went on LDN about the same time and I know, your experience has been even better than mine..:)

Thanks..:hug:

P.S. Hows your life going now and your new Home and stuff?

Happy Friday everyone:hug:

SL that is great news, congrats

Thanks Larry maybe when i am wide awake tonight i will register and read more, again thank you for the link

Again everyone happy Friday:Excited:

I'm doing great, went to 7 Bluegrass Festival week events in a 12 week period. My divorce was final 6/30 and so I'm fully on my own now.

Went for another MRI, my 6th, back in April. Same as 4/07 and 8/04.

http://www.larrygc.com/mystory has my story since Day 220, including my dad's story and my allergy testing results.

Thanks, Larry. Hows it been since June 2008..:D

It's great about your Dad, too. WooHoo!!!!!

All that Bluegrass...you'll be gettin webbed feet and that twang will stay forever.:D Glad you had such a nice summer. Ready for winter???? :eek:

hasn't really changed since June.. maybe when I get the official documents from the courts it'll have a greater impact. I never got a college deGree, so I'm going to take my divorce deCree and hang it as my Marital Diploma. 24 years, first it's a BS, then you get MS, so I guess I can hang my PhD Up (PheD Up). LOL

I never feel healthier than at Bluegrass Festivals, I Think it's from direct sun exposure during the days, but not too much to burn me. I don't think we need to take Vit D, I think we need the sun to process the Vit D through us, supplements just don't do the same thing as the actual process the sun makes the body go through.

I was wondering if those taking LDN for MS take any additional supplements, vitamins, or minerals. I read DL-Phenylalanine complements LDN by keeping the endorphins elevated during the day.

had not heard about that, thanks Tree, will have to look this up or discuss it with nero the neuro

I couldn't take DLP....Something about it raising your blood pressure..:eek: It's been so long, I forget, but I remember, I couldn't take it.

Brenda, who has been taking LDN for a long time (and whose mom takes it for breast cancer), has mentioned that Dr B recommends DL-P as a "pick-me-up". There are all sorts of warnings about it; people (with high blood pressure, etc.) who should not consider the use of it, so research is important before jumping on.

You might want to read more on the attached links:

http://www.freewebs.com/lovelaugh/dlphenylalanine.htm

http://ldn.proboards3.com/index.cgi?...play&thread=96

I know Brenda talks a lot about testing for yeast and the use of acidophilis too (which I do use, occasionally), but I haven't tried DL-P. Maybe I should, cause fatigue is still a factor for me . . .

Cherie

BTW, I like knowing that LDN has the potential to ward off cancers too. :D

I take B1 - 100 MG with my LDN 3.0 every day; sometimes I'll add a 400 of MAG, but that's IT

Thanks, Cherie, for the links. I will definitely read them.

Thanks, Larry. What does B1 do for you? Do you take it at the same time as your LDN?

Weegot, your welcome. There's so much to learn about what can help manage MS.