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Old 09-03-2008, 10:02 AM #281
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Originally Posted by weegot5kiz View Post
howdy Tree, welcome to Neuro Talk, I too am opposite I sleep better now, too

congrats Kelly,

for fact i am doing well enough to stop taking my speeder(provigil) each day , again Tree, welcome to the club,

ladies
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howdy all, you know what I noticed tonight, I cooked on the grill the last two nights got all of dinner ready prep and all, and stayed outside and it was really a bit warm its was 93-95the last few days so it was warm out and i was next to the grill, am pretty sure it was my intellect that saved me I went and sat down on the swing and rocked while i waited watered some plants, and I am doing ok, not fantastic but am doing ok. I will take it, cause i am not wiped out, like my normal had become,

muy beuno

good evening everyone
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
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Old 09-03-2008, 10:09 AM #282
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I was dizzy today for about 2 hours. I've been on the 3 mg. dose for 1 week now.

As far as sleep, it varies from night to night. I may wake up 5 times, but I go right back to sleep.

Last night I only woke up twice.

I will post a list tomorrow that I got from the pharmacist. I told him about my dizziness and so he looked up Naltrexone possible side-effects. There must be 3 dozen or so!!! But, as you know, everything that anyone has experienced and reported must be listed.
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
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Old 09-03-2008, 12:17 PM #283
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Hi, and , Tree.

Fatigue has been an issue for me long time before I started LDN, and I had been on an antidepressant (to combat fatigue) for about a year prior to starting on LDN. I didn't notice much of a difference either way when I started on LDN, but I did notice a big improvement in my fatigue level when I managed to ditch the antidepressant a year later.

I wall-walked when I went on LDN, and there was considerable improvement in this area. That was not something that changed immediately, but over time (about 9 mo - 1 yr), I noticed I had stopped wall-walking and wasn't thinking about every step on uneven surfaces.

Balance is something that comes and goes with me, especially with heat, but it's never again reached the point I was at pre-LDN.

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.
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Old 09-03-2008, 12:29 PM #284
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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
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Old 09-03-2008, 12:48 PM #285
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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).Cherie

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.
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Old 09-03-2008, 12:48 PM #286
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hehe, Frank: Nero the Neuro.

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.
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Old 09-03-2008, 09:22 PM #287
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Are your thyroid issues thought to be connected to the MS, or is that seperate? Is the balance related to the MS too, or could that be from the hypothyroid? Are they suggesting that the LDN may have contributed in any way to the hypothyroid?

I jumped ahead in your posting a little . . . but how is it that you have enhancing lesions when you are PPMS? Isn't that rare? Do you have relapses too, ie. are you perhaps PRMS instead?

Did you have a spinal lesion or TM-type attack prior to or since going on LDN?

Cherie
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..
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Old 09-03-2008, 09:39 PM #288
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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
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Old 09-03-2008, 10:31 PM #289
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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
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
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Old 09-03-2008, 11:30 PM #290
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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
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.
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