Tree I had those SX b4 i was on LDN, and even on it I still get them my right leg acted up all day today, felt like a cramp was going to come on and just hung back waiting for me to be asleep tonight, as for numbness i have been numb a long time and it bites:)

howdy howdy folks

Weegot5, I had the cramping prior to LDN too. I added magnesium and it has helped somewhat. It just seems too coincidental that the pre-charley horse cramp/toe cramp comes on about the same time every morning. It eventually goes away. I thought it might have something to do w/the dosage of LDN.

Maybe one of these days the cramping will just go away for both of us:icon_exclaim:

my doc has mentioned i quit smoking and eat more bananas to help mine, well i eat bananas but quitting smoking isnt happening, so another one of those lovely ms bs thingys. One of many I dont know if its this or that , that is hindering or helping me. trail and error I guess, hope it eases up, real soon for you

Heyah, Frank. Mebbe you could try smokin a banana?


Hehe, Sally -- I guess we're on the same diet then. Choccy and LDN!

Plus, I do accupressure on my rear end every time I sit down. ;)

That would likely be spasticity, which may or may not be related to the LDN. Sometimes LDN causes transient increased spasticity for the first few weeks (or even months) that you are adjusting to it (or a new dosage), or perhaps you may eventually determine the dosage is too high for you.

I find my spasticity gets worse in the cooler months anyway, so I have to do more stretching exercises, and I drop down to about 3.5mg for about 3 or 4 weeks till I climatize.

Staying in a certain position (like when you are sleeping), also seems to add to my spasticity. Try a 15 min nightly stretching routine; just simple exercises like foot rolls, touching your toes, etc. People prone to spasticity/spasms should do this on a regular basis anyone, but I have found myself slacking off this last year. Every time I start back up for a week or two though, the cramping stops.

As far as the numbness in your hands, that is just happening in the morning . . . that is likely due to the position you are sleeping in (and spinal lesions). I have that too, and my neuro said it is "like" l'hirmittes, whereby certain positions set it off.

Do you find the "excess" tingling/numbness mostly lets up after you've been up for 10 - 15 minutes? If so, try sleeping in a different position, or losing/gaining a pillow or two. I have to keep my back and neck completely straight to mostly avoid that sensation when I wake, and I get it when I sit a certain way in my recliner too. It always lets up quickly though, once I am not longer in the "trigger" position.

Cherie

Rochelle - Smoking bananas? Acupuncture on your rear by sitting down? You are so silly! :p I like the chocolate part of the recommended treatment. ;)

I am getting proactive about changing my medication from Avonex to LDN. My neurologist recently advised that I get a 2nd opinion on my MRI from last month. She is uncertain of some of the abnormalities she sees in the brain...they could be part of the MS, but they could also indicate "something new" to go with the MS. :eek: She even used scarey words like "brain tumor". :mfr_wha:

I will be seeing the Chief of Neurology for MS up North in Salt Lake City on November 19th. There are only general neurologists where I live. I'm getting all of my questions ready. The FAQ on gazorpa.com were very helpful.

Not quite sure about the Acupuncture...more needles?! :( Has anyone tried it?

I wanted to thank all of you for answering my questions. I'm really not trying to be a pain, and I appreciate your patience with me. :)

Your response confirmed what I thought might be happening. I started at 3.5 then went to 4.0, and dropped back down to 3.5 because of spasms. I'll have to determine if it's LDN being too high or spasticity I'll have to live with.

.

I do stretch before going to bed; but I do admit, not for 15 minutes. I'll try doing it longer.

You are absolutely right about sleeping positions. I have found I have to sleep on my back and keep my left leg perfectly straight to alleviate the pre-charley horse spasms. It's difficult to sleep any other way with your left leg straight. :eek: I'm trying though.

Your advice and remedies are always appreciated. You are a wealth of info. :hug:

I eat more bananas too. A story about smoking and MS. I was a smoker. My presenting symptom was loss of vision in my right eye. I thought I wasn't getting enough oxygen and that was the reason I lost vision. It was logical to me at the time :confused: So I quit smoking. A few months later I was diagnosed with MS. I was tempted to go back to smoking (since that wasn't the reason for my vision loss) but I didn't. I joke that I quit smoking for nothing :)

You are so right......trial and error.

Not acupuncture, silly: acupressure! ;)

Sorry about your scary MRI. I hope it turns out to be nothing to worry about. :hug:

Nobody said you were a pain, did they? We like discussion around here, so keep asking!

I'll go check out gazorpa--hadn't heard of that website. tks!

Connecting more dots?
 

From the FAQ's at www.gazorpa.com it says:

How does LDN work?

It is believed that LDN briefly obstructs the effects of brain endorphins (the brain's natural
painkillers). Sensing an endorphin deficit, the pituitary signals for increased production of
endorphins, which re-balances the immune system, thus reducing the activity of the MS. The effect
lasts around 18 hours.

My doctor told me that my five pregnancies kept the MS at bay because pregnancy suppresses the immune system. Since the two theories don't agree, I decided to check out the "endorphin" connection. What about endorphins during pregnancy? In article on www.pubmed.gov it said:

Most studies of endorphin concentrations in pregnant women show that these are highly elevated.

Did I connect some dots?...This would add additional support to Dr. Bihari's theory on LDN. Please don't call me crazy, LOL :Crazy 2:

Just an idea...any thoughts?

Watch out...she's trying to doctor herself! :doctor:

Funny, I too have to keep my left leg perfectly straight. Odd, eh?

It may not be spasticity that you have to live with, but if it is caused by the LDN, t may be that you adapt in a few weeks or months. Personally, I would:

1. Try the stretching routine first, for about two weeks.

2. If that doesn't work, drop the LDN down to where the spasticity (perhaps) stops.

3. Once you are stable on that dosage for about 3 weeks, try slowly increasing the dosage again (at .5mg intervals, if possible).

I had horrible spasticity pain before LDN, and it took it away completely. I have had short periods (a few weeks) where it's come back and I start up the stretching again, but NOTHING like what I lived with every day for the 2 yrs prior to LDN.

Cherie

Some people do much worse during pregnancy too . . . but most do better. They don't know yet why this occurs; hormones, endorphins, GOD having pity on us :p, or whatever.

Even after all the research I've done, over the last 18 or so years, I really don't know why some meds "seem" to work for some people, and others "seem" to work for others. Unfortunately it is often very difficult to evaluate the effectivenss because the current measurements for 'success' on these drugs is very dubious . . . especially for each of us as INDIVIDUALS. :cool:

For instance, if a drug works to reduce relapses by 30% (and doesn't work 70% of our relapses), that doesn't mean we aren't going to be just as disabled as we would have been with more/less relapses. And how does one measure whether they are realizing that 30% reduction anyway . . . ?

I think the average number of relapses is around 1.5 every two years (.75 per year), and even if the med we use reduces that from 1.5 bi-annually to 1.0 bi-annually . . . that only amounts to a reduction of a couple of relapses over 10 yrs (on average).

Since these are just averages though, it is very possible the meds could reduce some people's relapses by 100% . . . and that is exciting if you are THAT individual. However, if 30% of the people are seeing a 100% reduction, that means everyone else is getting no benefit what-so-ever. :(

It's a crapshoot with EVERY drug we take, for sure. We don't know if we would be worse off if we didn't take it . . . or if in fact we would be better off. :confused:

I understand why someone who doesn't get symptom management improvement on LDN would be discouraged, but that doesn't mean it's not working either. That is true for all the meds we attempt . . . there is no way to determine if they are working for us as individuals. However, if one does get symptom improvement from LDN . . . that is sometimes ENOUGH to want to stay on regardless of whether it is working for the underlying disease progression.

That's why I recommend using Copaxone at the same time though (even every other day, which has proven equally effective in a couple of small studies). If you do that and stay stable, you won't know which drug to credit . . . but who cares?? :p

Cherie

Bummer
 

My neurologist said no to the LDN Rx. She told me that she wants to see what happens with the clinical trials in San Francisco first, but that could be years. :mad:

I will try my primary care physician next. I would love any tips on how to get the Rx for LDN. I'm frustrated...really don't want to do my Avonex shot this Sunday. :rolleyes:

The clinical trial in San Fran has finished, and at least some results have been published:

"Dr. Bruce Cree from the University of California, San Francisco, presented the results of his 8-week clinical trial of LDN in multiple sclerosis. The trial was a single center, randomized, double masked, placebo controlled, double-cross over study of naltrexone using 4.5 mg daily to evaluate Quality of life. The multiple sclerosis quality of life inventory (MSQLI) was used for the evaluation. The study involved 80 subjects and 70 patients completed the trial.

Results
Compared to the placebo, LDN significantly improved the mental health component summary score. Quality of life was improved on all parameters. Pain was also reduced by LDN. The study showed that short-term use of low dose naltrexone was well tolerated and appears to benefit mental components of MS. Physical improvements were not noted in this study, which could be related to its short duration."

http://autoimmunedisease.suite101.co...iple_sclerosis

I'm not sure why she would have been waiting for those results though as it was a "safety" trial (for a drug that's been on the market for about 40 yrs). There were allowing people on any CRAB do the trial though, in combination with LDN . . . which is contrary to Dr B's advice. It's great that it seems to have proven SAFE & effective (over 8 weeks) . . . but it doesn't prove it is more effective on it's own, in the long run, or combined with Copaxone.

There is more trial information on this site:

http://www.ldners.org/research.htm

You need to get all your ducks in a row, and not be impatient. It took me six months to wear down my doc, but it was worth the effort. :D I have a helpful link to help you prepare your case for your doctor, so please PM me if you want to read it.

Cherie

I know exactly how you feel. My neuro didn't flat out say no, but initially discouraged me from trying LDN. After 5 years on Avonex with a return of flu like symptoms and a short month of Copaxone, I asked for it again. This time it was prescribed. I have been on it for 5 months and have seen some improvement. I'm still working on some minor adjustments (see above posts.)

I would take Cherie's advice and PM her for the link to help convince your doctor to give LDN a try.

It did go away for about 5 days back in August while on vacation. I was on 4.5 at that time. When it returned, I dropped back to 3.0. I've been back on 3.0 for about 2 months now and it still presents itself. Perhaps I need permanent vacations :)

I'll try stretching and then experiment with dosage.

Somewhere on www.lowdosenaltrexone.org I read that if you have spasticity to drop it to 3.0 and stay there. Has this been updated Cherie to where you are still supposed to try to up the dose to 4.5?

And Cherie...thank you soooo much for your help! What a blessing you are to all of us. :hug:

That hasn't changed, Brenda....3mg is an effective doseage for many on LDN. 4.5mg is the optimal doseage for those who can tollerate it, but not all can.

3mg is the original optimal doseage Dr. Bahari scripted. He found that some of his patients were not having optimal results with 3mg and so upped it to 4.5, but still scripts 3mg for those who have a lot of stiffness at 4.5..

I hope your Neuro or PCP will script LDN for you, but, if not (mine won't), there are MDs who will do a phone consult with you, who believe in LDN, and script it for you.:hug:

Hmmm ... were you vacationing in a warm/hot place by chance? My spasticity is much worse in the cold weather then it is in the summer, which is why I knock my LDN down to 3.5mg when the weather changes. I always manage to get back up to 4.5mg, but it takes about 3 weeks of "climatizing" before I attempt that.

I'm still on 4.5 mg and seem to be tolerating it well. My dizziness and vision problems haven't come back. I still have to pace myself. I overdid it the other day and paid for it the next but it felt so good to be able to be active!! I'll take the aches the following day 'cos it's well worth it! :)

Yes, many men and small/tiny women (around 100 lbs) can not tolerate more then 3.0 mg, and others with spasticity problems sometimes can't either. For some of us the spasticity is just a transitory initial side-effect, or occurs only during cold "weather", etc, so it may require some trial and error/flexibility to find out what works best for us as individuals.

I couldn't get up to 4.5 mg for about 6 months, and have to drop down for a few weeks every Fall when the colder weather hits . . . however for the rest of the year I am fine at 4.5mg.

3.0 mg is the "ideal" dosage and sufficient for many of us (according to Dr B), so I wouldn't be too concerned with forcing the 4.5 mg dosage level. We are still "protected" at 3.0mg . . . it's just that some of us are determined (for no particular reason :rolleyes:) to keep trying to get to 4.5 mg. That dosage may CAUSE problems for some, or IMPROVE symptoms for others . . . so it's a matter of finding what works best.

You are welcome, Mom2Five.

Cherie

Actually, I was in KY. I will have to look into that.

This makes sense to me...thanks! ;)

Where can I find a copy of this publication?

I got that quote from Sammy's website:

If you click on the various links on that site, you will find most of the recent trial results. That trial was very short, and it included people on all the various CRABs, so I didn’t expect it to have amazing results . . . although it does seem there were some.

The recent trial that I am most impressed with is this one:

http://neurotalk.psychcentral.com/sh...ose+naltrexone

The link I have in my first posting (of the above link) shows that it was published in Pubmed, which is very impressive to doctors.

Cherie

LDN stands for, Living Darn Nice..:D (Under the circumstances)

I don't know if the stuff is doing anything.......all I know is that I Feel Better than I did on those shots.

I hope everyone is doing as well and feeling as well..:grouphug:

I have a message in to get a consultation today...I'm hoping for the Rx soon. I didn't do my Avonex yesterday and feel a little bit better today. I appreciate the encouragement and the help. :Tip-Hat:

Hi My name is Jnet this is my first time posting on this site. I just started LDN 11/1/08. I'm taking 1.75 one night and 3.5 the next. We want to slowly bring my immune system up. then pretty soon 3.5 for a month. then we will try 4.5. When I do the 3.5 I feel more enerergy. I feel a little bit better balance but not a lot yet. I am excited. I quit Tysabri in September. :)

Welcome to Neuroalk, Jnet and to our little LDN thread..So nice ro meet you..:) .. That's a strange doseage combo you are on, but whatever works for you, is okie dokie with me..:D

I'm happy to hear it seems to be helping you, so far and I hope is continues to do so and even improve over time.

So sorry the Ty didn't work for you.

Let's hear more from you and again, Welcome..:hug:

Welcome jnet! I'm new too. Everyone is soooo helpful. Be sure to let us know how you are doing. We're in this together! ;)

Hi and welcome to NeuroTalk! Glad to hear that you're doing well on LDN. It's exciting to feel better, isn't it?! :)

Hi jnet and welcome to NeuroTalk!

I do hope the LDN works for you. I'm like Sally -- I hope the LDN helps, but at least I can feel "proactive" w/o taking shots. Yippee!


When I first began LDN in August, I felt absolutely GREAT the next morning! I don't anymore :confused: (mornings are slow), but what I DO have is improved stamina. I've been sanding and stripping wallpaper today -- something I never even would have attempted a year ago while on Copaxone.

Good luck and well-wishes to everyone on this forum! :grouphug:

Hello Jnet. Sorry Tysabri didn't work out. I hope LDN is the answer for you. You have come to the right place for answers and support. I have found suggestions made here most helpful. I know you will too.

Twink - perhaps you are overdoing it?! I find that when I feel better, I tend to do more than I should. This was a lesson that I learned the hard way over, and over again. Especially during my first year. Actually...I slip up all the time, I'm not so sure I have learned the lesson at all. :D

Yep
 

I’m like you in that respect, mom2five. It seems that there is something in me that insists on pushing the envelope. I do try to be sensible about my physical activity. But since LDN has made me more capable, I see this as an opportunity to rebuild some muscle mass that I had lost due to years of inactivity. Like the old saying goes, you can’t make an omelet without cracking some eggs, and you can’t build muscle mass without pushing yourself a bit. It would be nice if I could just kick back and enjoy my new found mobility in a laid-back manner, but a really healthy body has a robust muscle mass. It is my hope that, with moderate effort, I can see a reduction in my BP and weight. I’ve always said that I want to be the healthiest MS patient I can be.

When I feel good and have energy I make the most of it. Yes, I know I may or may not pay for it later (with fatigue) but while I'm busy it's just a wonderful feeling! :)

I have my phone consultation set up for next Tuesday! :D I can't wait to get my Rx for LDN! I already feel better off of the Avonex...skipping the shot on Sunday was a great decision. I feel so much better. It could be coincidence, perhaps I am going into remission again. Whatever the reason, I'll take it!

Good for you Marion! I want to be healthy with MS too. ;) I do small amounts of exercise throughout the day. This seems to work best for me. I am a "rebounder" and love it. :trampoline:

I picked up the habit about a month ago when my Mom sent it to me. I think she is just trying to help. It really bothers her that there is not much she can do for the MS. She's kind of a control freak, but I love her anyway. :rolleyes:

So often we get the question from newbies, "will my DMD of choice (usually Copaxone, Tysabri, Rebif, Betaseron, Avonex) make me FEEL better". That is always a hard question to answer directly because quite often it may make them "feel" worse in many ways . . . BUT if it works to control the number of relapses they have, ultimately that "feels" better.

With LDN, it does seem to help a number of people with some of their symptoms ... but just like the approved DMD's, we have to remember that is not the goal of utilizing this treatment. Over the long run, if it reduces (or eliminates) relapses, that will make us feel better :), and if progression of the disease is limited (or minimal), this will keep us feeling better much longer :).

If all we can achieve is those results, it's all good IMHO.

Cherie

Be careful not to push it to much. I have learned from experience To go slow. I have been on Betaseron, Copaxone, Rebif, Tysabri and ow LDN. LDN is my last choice before chemo. I have had ms for 10-1/2 yrs. I'm still walking. I look like a drunk sometimes, but hey, that's ok. I can't walk far and I know my limitations now. I use to push it, and then I did more harm than good, so be careful. Excercise and work is good, just don't over do. I have learned the hard way. I'm not looking for LDN to "cure" me or turn back time, but it would be nice to stop things till a cure came along. :)

Oops ... I originally came here to welcome you, jnet, then forgot to. :(

:Wave-Hello: :welcome_sign: to NT, and LDN too. :)

Interesting approach to adapting to LDN, by alternating the dosage like that. Where did that idea come from? I started on 3.0 mg (way back when), but it might have been easier to alternate like you have done.

I take it Tysabri didn't work for you, if you are thinking you feel a little better without it (perhaps also because of the 3.5mg LDN)? How long were you on T for? Did it keep disease progression stable for some time though . . . cause sometimes that's all we can accomplish with the various DMD's we try?

I hope you finally found your ticket to stabilization. :) Unless you continue to have lots of problems, I'd give LDN 9 months to a year . . . as that is how long it took many of us to have some sense of confidence that it was working for us for relapses and progression (although I had considerable symptom mgmt relief from the get-go). I was on a bad downhill slide at that point, after 14 yrs with MS, and have not deteriorated neurologically since I went on LDN . . . at least according to my neuro. ;)

Cherie