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anyone on ldn for rrms

Just wondered if anyone uses ldn for rrms as well as dmds. Ive been diagnoised a year and in month 3 of copaxone and wondered about ldn. Ive read u can take with dmds but what if you then have to go on a stronger drug at some point or one of the pills, can you contine taking it then. Would like to hear peoples experiences, has anyone got worse on ldn or better. Many thanks x

l take LDN - and l am SPMS - its worked well for me. Before starting on it l did read quite a lot about it - and folk on this site were more than helpful. lt seems it is OK to take with dmd’s. And l can’t imagine it making any difference to you taking any other dmd.

lts codeine - an opiate that you can’t take with LDN. So l take my LDN about 8pm. Then l can take codeine at 11 or 12 oclock and again in the morning. LDN stays is active for 3hrs. At least that is how l understand it.

lt works well for me - making me feel more positive and brighter. No brain fog - and also no trigeminal neuralgia which is something l suffered with. l know this works as l did stop taking it for a while - just to see how ‘different’ l felt. And back came the TN - then it stopped when l resumed the ldn.

The ldnresearchtrust.org will give you advice. They are all volunteers - so are not out for your ‘business’.

Hi Zoe - I’m seriously considering LDN at the moment too. I’ve been on extavia for 2.5 years and have had a few injection site problems recently, so wondering about coming off extavia altogether and trying LDN.

I feel my MS is pretty mild (relapses have been very few and sensory only). I have a neuro appt later this month and will ask about it then. Like Zoe, I’d really like to hear from anyone who is using LDN.

hi zoe

i have been on ldn for 8 years. initially i had 11 attacks in less than 2 years. my neuro at time was worse than useless and said it was all in my head! despite mri confirming ms. so i started ldn-no more attacks for 6 years. i only started to see new neuro about 2 yrs ago after having a huge attack affecting the whole of right side-which is a bu**er as i am right handed!and my speech. nothing has fully recovered although there has been small changes but have now got powerchair and carers here 7 hrs weekly.

i was never offered dmds by original neuro, i have just had my 3rd dose of tysabri and still take ldn (with neuros knowledge but not blessing cos he cant!) i have never had a uti (common in ms)

i wont be without ldn! looking back ldn did what it said on the tin at the time. ms is such a weird and wonderful disease, NOTHING surprises me any more with it! search FAS (foreign accent syndrome!) thats been me for 2 years!

as sj says above ldnresearchtrust is great place to ask questions

ellie

hi zoe, ive been taking ldn now for 2 yrs and i feel if anything it makes me fell more positive and touch wood ive not had a relaspse for 2 yrs, well worth a try, you just need to get the dose right that suits you, ellie also gave me gd info on ldn. gd luck. Tony.

Hi Zoe,

I take Rebif and LDN. I’ve been on the LDN since 08 and there are no problems with taking the two drugs. My liver enzyme tests have been better since the LDN. It’s worked wonders on my bladder.
Try the LDN Trust for info - there’s a lot of opinions and beliefs that you can’t take a beta-interferon and LDN together, but this was debunked about 4 years ago. LDN boosts the endorphins and this in turn, helps to strengthen the blood/brain barrier and it is thought that Rebif also works with the blood/brain barrier as well. It doesn’t boost endorphins unfortunately, but when Rebif works, it really stops/slows the rate of relapses.

I hope this helps,

Ibu

I’m a bit gutted as have heard that some GPs / neuros will prescribe LDN. Mine won’t as it’s ‘not proven’. If you read the info about LDN, it seems it’s only not been researched for MS as there’s no money in it (patent for LDN has expired is my understanding). So I think it’s either a private script from GP (if she will) or off to one of the online prescription services. Fingers crossed it works for me. Thanks for the useful posts here. Have also checked out that website - really useful. xx