This Is MS Multiple Sclerosis Community: Knowledge & Support

Been on 3mg since 27 February 2010; mobility continues to decline. Especially spasticity in legs. Being right at the 5 month mark, I think tonight I will try going down to 1.5mg (1 pill a night instead of 2). I am underweight. I did see some improvement in the first 2 weeks of ldn, when I was taking 1.5mg to ease my body into it.

I went completely without ldn for about 4 days while on a road trip a month ago--I was tired...not sure how much of that was going on a whirlwind road trip or if there are withdrawls when suddenly stopping LDN? I missed a few doses after I returned home, felt awful and decided it was due to not having the nightly dose.

I'm so tired of this spasticity. I don't know if LDN is contributing to it. I won't up my dose to 4.5mg because I've read that if spasticity is an issue, not to go above 3mg.

I'll try 1.5mg for 3mos. and see if the spasticity lessens.

_________________
Laura
Dx 1999
JCV+
And now...taking Aubagio.

Daughter (diagnosed at age 15) tried LDN after giving up on Beta and Copaxone. Difficult start-up. She had an anti-fungal treatment, worked her way up to 4,5. Her energy improved, as did her resistance to heat. But at the end of 8 months, she felt that a relapse was on its way. We did before and after MRIs which showed she had 14 new lesions!. She started Tysabri the following week and has felt great ever since.
Her neuro suggested that in kids&teens, MS is often rather virulent. That LDN might work better for her when she is a bit older, a bit more stable. ?

good luck to all.

So how do you get rid of the yeast problem before you start LDN?

The way I've dealt with it is to take a good quality acidophilus supplement, one that was recommended by my physician. I take these supplements 3 times daily, and have been for almost 2 years now.

After starting LDN, but before starting the acidophilus, yeast infections were a problem for me.

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Thank you so much for the info Tracy. I'm going to start Acidophilus today.

Hi, I'm 35 female.
dx in 2006 RRMS
Optic neuritis in 2006, again in 2007 -
vertigo in March 2011
Double vision Nov 2011 -
Took IV steroids for each relapse, no other medication/interferon till date
Now Neurologist has advised Avonex, as DMT protocol is 2 attacks in a year.
Neurolgist has done CCSVI but calls it an experimental procedure, prefers DMT.
Should I start CRAB or start LDN? Please advise. Thanks

I'd recommend taking a DMD that is compatible with LDN, then you can take the DMD and LDN simultaneously.

I've taken copaxone and LDN together several times over the last few years.

Now I only take copaxone. The spasticity that came with LDN was too much of a problem for me.

Good luck.

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

Thanks Tracy.

I have read so much against CRAB that it is hard to go for it. Possibility of 30% reduction in number of relapses. Does is also slow down progression....

On the other hand, have read so much positive about LDN, CCSVI, Diet, yoga. Should I insist with doctor for CCSVI...what was your personal experience....

Does 30% reduction a good deal to go for interferon which weakens immune system - 52 days a year there will be flu and possible depression....or these side effects are not that real....

Just can't make up my mind...very confused...

Copaxone does not come with the side-effects you mention, it is not an interferon. I have never heard that Copaxone weakens the immune system, it has been shown to reduce relapse rates, reduce the formation of new lesions, and reduce the occurrence of brain atrophy. Until the ultimate cure comes along, I'll go with a reduction in progression. Depression and flu-like symptoms were a problem for me when I used the interferons (betaseron and rebif), which is why I switched to Copaxone.

About the question of CCSVI treatment, I informed my Neurologist of my decision to have this treatment (after the fact), I didn't ask for his opinion or approval. If I had, I'm certain he would have cautioned me to wait for further testing and research to be completed before proceeding.

--Tracy

Hi ccsviindia, and welcome! Yes, it's very confusing to make your way through the pros and cons of treatments. It would be much easier if we weren't all so different in the types and stages of MS, as well as the rest of our health. I, like many of us, am plagued by several other medical conditions that are probably having even more of an effect on me than MS. We're all completely unique.

I won't give any treatment suggestions, but clarify some points for you.

You said:


That's not actually the case with the CRAB meds. It's not that everyone who takes the CRABs has a chance to lower their number of relapses by 30%. The truth is that during drug trials all 4 CRABs came up with an average percentage of around 30% fewer relapses - in the trial group. And it's usually stated that the average number of relapses is only about 1 a year. That makes it 30% fewer than one.

So....that means that some in the trials may have had a great result, some may have become much worse, some remained the same. There's no way to tell which med would "work" for you or even if it has "worked" for an individual patient. I was just told to pick a med, it doesn't matter which one.

There are individual forums here with research and experiences on each of the main treatments, and also on CCSVI, which is actually in the beginning, investigational stages of experience. The CCSVI treatment isn't yet standardized, doctors are in disagreement, and many insurance companies won't cover it. It's so early in the discovery phase that the field changes constantly. You should study CCSVI thoroughly before you invest thousands of dollars in a treatment that may not help or may need to be repeated regularly. No one knows for sure yet.

LDN is also a treatment that hasn't been studied well, so most reports are anecdotal. I took it for a year and thought it helped some symptoms, but its 'claim to fame' is supposed to be stopping progression. In my case, I was healthy going into that year, and halfway through it I progressed to using a cane. I've continued to progress since then. Since LDN made me feel so good, I hate to blame it, but geez! My doctors refuse to give me a scrip for LDN anyway.

On the other hand, a healthy diet and plenty of exercise will help your overall health, and would go along with any other treatment choice.

Good luck to you!

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Hello All!
I am currently suffering many issues with my MS. Luckily I am sill mobile. I have horrible problems with fatigue and bladder emptying and just not feeling well. I also am a single mother to a toddler so it's important for me to have energy and remain on my toes. I have tried rebif and was not pleased with the way it made me feel. I live in Indiana. How can I get prescribed LDN?

I was diagnosed in 2010 and took Gilenya for 8 months. My liver enzymes went thought the roof. My neurologist took me off of it. By this time we figured out I had PPMS. He did not feel comfortable giving me any of the DMT on the market. I asked him about LDN and he said I could give it a try. This was a year ago (3mg). To day I have had no symptom improvement, actually my symptoms have got worse. However, a follow up MRI (spine & brain) for 1 year, showed no new lesions and I have no new symptoms. I view this as the progression of the disease has been slowed. I hated the possible side effects of the DMT on the market.

I will be starting LDN in the next week. My doctor hasn't said he'd prescribe it, but I know I'm starting within a week. You see, I decide my life and how it plays out. I have done all the CRABS and High Dose Chemotherapy, HiCy for my MS. I have done bee stings, hyperbaric oxygen, and kefir. I have been drug free in remission for 2 1/2 years from the HiCy, but with my symptoms now returning, I am choosing to try LDN and Monolaurin.

I will tell my doctor my plan, and that I'd like him to keep track of whats going on and how it's working for me. If he refuses, I will order online and do it anyway. I can self dose 1.5 mg to start and increase to 3mg after 2 or 3 weeks. Yes, I prefer my doctor is involved, he got me into the HiCy study when he didn't know anything about it, I trust he will be on board with this too. Our bodies are our bodies, and we can obtain without prescription, LDN.

I strongly feel, after researching LDN, that everyone should be starting at the smallest dose, 1.5mg and then increase to 3mg after 2 weeks to a month. Once you've given 3.0mg a few weeks, then you can increase to 4.5, but if you feel worse, go back to the lower dosage. Don't let your doctors set you up to fail on LDN, by starting you at 4.5mg!

Just my thoughts. I wish you all the best with your different decisions. Good luck to all starting LDN, including myself!