Hi Desinie,

I too was scared of the side effects and it does give me more spinal pain right now. I think the ability to "walk better" and not fall ever couple steps is making it worth it at the moment.

Yes maam. It is a mod med that is oral. It is still in the trail phases and that makes me nervous because it's not very well established. I will talk to the experts and get their ideas when I go. Sally you seem like a very stable, caring and helpful person. I'm happy I met you here.

Hi Karliann,

unfortunately I was told not to cut Ampyra but that sounded like a logical option to me. Thanks for sharing your ideas about this with me. I'm glad to hear that was an option for you with that med you were taking.

Thank you for that Debbie. It really helps to know your neuro has experience with giving it sooner than 12 hours. I think taking it a little earlier can help me with sleep some. I appreciate the info. I'm also happy to read there was only one person but it can also be accounted for with the unreported epilepsy.

Hi Judy! Thank you for the welcome to this site. Yes maam, I've tried LDN and really like how it helped my walking. My first neuro was also a researcher and did not believe LDN was useful and "People only want it because it is a narc." I disagreed with him and told him of my personal experience of using it to walk but he was only dismissive. I'm sorry, I don't know what SP stands for I only know PP and RR MS. Can you please tell me what SPMS is? Thank you.

Some researcher your Doc is. LDN (Low Dose Naltrexone) is NOT a Narc. As a matter of fact, Naltrexone, at much higher doses (up to 300mg), is an antagonist to narcs....People use it to get off drugs and alcohol!!!!

See what your Doc has to say about that....Sheesh, the misinfo out there about this harmless low dose (4.5mg), helper med for MS, kills me.

I take LDN. I wonder how many folks think I am a drug addict?!

Yes, I am amazed at your neuro's lack of knowledge regarding LDN!!! There are "zillions" of websites, forums, etc., where information is shared. It's such a shame that a side-effect free (for most people), inexpensive pill is dismissed by so many when it can produce great results. It certainly isn't a narcotic since higher doses are used to help people get off heroin. From my experience, the "narcotics" prescribed by our doctors have more ill effects than LDN ever did. Okay..........I'm off the soapbox now!

FYI......SPMS is Secondary Progressive MS. It started off as RRMS then progressed over a number of years with fewer flares but symptoms remain. In other words the downhill slide really begins.

My neuro says LDN is "hooey!" and he refuses to prescribe it. he also says CCSVI is a "placebo effect" in the main stream right now, and as folks calm down they will see that it was all a waste of money. This is the local guy that told me "you are too old for ms! why are you really here?"

The big girl hospital has more of an open mind, but isnt interested in giving out LDN nor a script to see a vascular guy.

Either one of these might cause you to have to have fewer visits to the Neuro and fewer meds that cause problems of their own. How dare we want to feel better!