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! :)