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Old 02-26-2008, 12:59 PM
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lady_express_44 lady_express_44 is offline
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Join Date: Aug 2006
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lady_express_44 lady_express_44 is offline
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Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
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Sally bumped up a prior thread for you, so I won't the details of my prior posting:

http://neurotalk.psychcentral.com/thread37626.html

I started at 3.0mg in May/05, but I think most people are starting on 1.5mg now. I did have some initial side-effects at that dosage, but nothing that was too disruptive:

- flushing/hot feeling for two days
- didn't need hardly any sleep the first few days, but didn't feel worse for wear because of that
- nausea for about a week, till I figured out I needed to follow the recommendation to down a glass of water right after taking it
- I think a slight headache

Considering how terribly sensitive I am to drugs, I thought I got off pretty easy.

The good I experienced very quickly from LDN was AMAZING though:

- claw hand (five yrs) disappeared
- spasticity pain GONE
- bladder/bowel control
- fatigue improved (but even much better after getting off A/D's)
- dropped A/D's
- stopped relapsing (had been relapsing every 3 months prior to LDN) NOTE: I have been relapsing again this last (stressful) year, but not nearly as severe as prior to LDN
- EDSS reduced by one point in 9 months, and I have remained stable in disease progression (by that measure)

Some improvements were very subtle and over a longer period of time too. I have witnessed people go off LDN, thinking it wasn't helping, then watched their attitude (and progression) go straight out the window. Unfortunately though, if people don't see the symptom improvements some of us get (only 2/3 realize this benefit), sometimes they don't think it is working for them. I'm not so sure I agree . . .

Personally, I know that LDN helps me because it only stays in our system for about 18 - 24 hrs. If I go off for one day, I start to slide right away . . .

You may need to go up and down slightly (especially when the cold weather/spasticity hits), so I guess I am fortunate that I use the liquid version. However, I would recommend you get the drug from Skip's (1.5 mg capsules) because he is the most experience with compounding. You'd probably want to start at 1.5mg too, as most people do now.

Cherie
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