This Is MS Multiple Sclerosis Knowledge & Support Community

First time poster here. First, a little background:

37 y/o male, SPMS Dx 11/01. Drugs tried: Copaxone, Avonex, Rebif; none of which seem to work, and all of which made me miserable w/ side effects. Not taking any frontline MS drugs @ present. I've had 6 or 7 courses of IV SoluMedrol over the last several years, each one with less desired effect than the one before. I currently take Adderall XR for fatigue (20mg BID) and Baclofen (10mg TID), plus supplements, and herbal & homeopathic remedies.

I was hospitalized w/ pneumonia & septic shock in 1/07, on a ventilator in ICU for 4 days, then a week on a regular hospital floor, then 3 weeks in acute rehab. According to my neuro, there was some new damage as a result of all the fever & infection, but no new lesions. I never went back to work, & am currently on disability. I recovered about 80% of my pre-pneumonia function.

My wife first read about LDN online a month or so ago & got me curious enough to try to get it. Just had a neuro appt today, and he wrote the Rx after a 30 second conversation. No fight involved at all. According to him, he doesn't advocate it, but doesn't stand in patients' way if they ask for it; yet doesn't believe there's any credible evidence to support its effectiveness. Took the script to a local compounding pharmacy & it'll be ready in the morning. $75, asuming insurance won't pay. Looking into lower cost venues for the future.

I'll post here weekly for a while whilst I give it a go.

2 weeks, no change either way.

Just over 1 month on 3mg LDN nightly. Still no significant change either way, but I'm noticing a slow, gradual trend toward feeling better.

One night, about a week and a half ago, I woke up to go to the bathroom. I use a walker outside the house, but a cane in the house. I walked around the bed & noticed that I was hardly relying on my cane at all, so I carried it & walked without it to the bathroom & back. I woke my wife up to show her, & I walked again, this time the length of the house, twice, with no cane or other walking aid of any kind; no leaning on walls, steady gate at a normal pace. That hasn't happened again, but I've wowed the kids a time or three with the pace I've kept up using "just" a cane.

Bottom line: I'm encouraged enough to continue.

This night's walk is quite encouraging, i hope for you that this moon walk will go further, and maybe some daily walk.

It happened again last night. Same time as when it happened before(approx. 1AM), got up to go to BR, walked length of house twice w/ no aid.

That's so great! Congratulations! I have seen some benefit with LDN also. I hope you continue to see improvement in your walking! Isn't it exciting to have something go right?!
Lori

Loriyas wrote:Isn't it exciting to have something go right?!
Lori

Yes! Something! Anything!

2 full months on 3mg LDN.

Still a slow, steady climb toward feeling generally better. I'm sleeping better, bladder control is better (not that it was really an issue before, but I can put off the urge to go for much longer.

I've had some VERY good days. Went out w/o taking my walker a couple of times. Did a flight of steps like I did pre-pneumonia.

The recommended dosage for low-dose Naltrxone is 4.5mg to treat MS. I would increase the dose.

I go back to the neuro in Jnauary. I'll ask for 4.5mg.

May I ask in what strenght are your LDN pills? If they are 1.5 then three would equal the 4.5 recommended. I started with 1.5 and took 2 for a 3mg dosage to start the first month. Then up it to 3 pills for the dosage of 4.5mg. I responded quickly at this dosage. Not everyone may respond as quickly as I did but I have also noticed continual improvements in the last 6 month. Dr. Bihari who began the treatment of MS about 20 years ago had found that the optimal dosage for MS was 4.,5mg. Not even my Neuro knew this.

I take 3mg now. I asked for 3mg just based on what I had read online. It seemed to be what most people were doing. The optimal dose seems to vary depending on who you ask.

3mg is OK if you experience certain reactions and can't tolarate 4.5mg. Look on-line for "LDN treatment" for more info. Good Luck Jake.

This is exciting news. I need to find a doctor in central Florida who will prescribe LDN.

Hello, look at this web site: crystal's MS,TM, & LDN , she keeps a web site with enourmous info on LDN. You can email here and ask for her list of Dr's who prescribe in Florida: crystalangel6771@yahoo.com. There also is far more info on the web, she has pretty much captured most on her site. Good luck Mardie