Well, the LDN has arrived so I’m going to start it tonight.
My walking has gotten so much worse so I’m using a stick all the time (except if I’m pottering around the house), I only gave in and got it about 6 weeks ago… I really can’t afford Fampyra so that’s a kind of last resort for me, I’m self-employed so really need to try to continue working!
Who else takes it? I’m sure I read comments about it here first but things have been a bit of a blur recently if I’m honest
Weirdly, the steroids didn’t help the MS much but did help my tummy (it seems I might have Crohns but that’s an ongoing saga…) so I’m hopeful the LDN might suit me for both. I’m literally just a pound or two away from 7st so I’m really hopeful I’ll continue the weight gain for a little longer
I have been taking the lovely stuff for nearly ten years and have no intention of stopping. Start on a low dose (say 1ml) and look to increase by .5 every couple of weeks, or as the drug is tolerated, and all should be fine.
Thanks Whammel, I’ve read all the info with it so yes, 1ml each evening for the first week. I think I might have read one of your comments actually
I was most impressed that it smells a bit like Galloways (remember that?) - I had a sniff as I panicked a bit that it was liquid… The last liquid health-type thing recommended to me was neat aloe vera, lets put it this way, it all ended up down the plug-hole, mixing it with OJ did NOT help! lol
Hi Sonia, I started taking LDN in January. Very happy with it, I’ve had improvements with both bowel and bladder problems. Both these improvements came after about three weeks. Good luck Nina
Hi nindancer, My name is Paul from Australia i have been on LDN for about 8yrs and take it in liquid form and i have been on 1ml per night since i started it and i am happy with that dosage so no need for me to increase it , good luck and take care Paul
I take the liquid form and wouldn’t be without it, but when I first started with ldn it was with a capsule and I remember rolling it round and round my mouth before plucking up the courage to actually swallow it! I’m so glad I did though, it was helped with buzzing and bladder - I’ve been on it 8 years now.
I had a consultation via email/internet and then the website disappeared (So I can understand your nervousness Hilary, it felt like I was up to something naughty!) but the emails confirming my prescription were from the pharmacist, so I kept my fingers crossed.
I’m hopeful if it works out, my GP will prescribe it - he swung between a ‘yes’ and ‘no’ when I discussed it with him - I felt bad and said I’d look into a private one when he looked so worried.
Fingers crossed anyway guys. It’s so good to hear that others find it helps with other symptoms, it was the spasticity I really wanted to go away, if it helps with other stuff then that’s would be a bonus
Hi Sonia, Forgot to say when I last posted…I started by taking it at night too. Had quite a few nightmares and problems sleeping ( not a good sleeper at the best of times tho) decided to try taking early AM instead and found that was much better. It seems that it is different for all of us and whilst I’ve had no improvement with fatigue, buzzing or spasticity I am never the less happy with the improvements. Also forgot to say that for the past 4/5 years I’ve had a thick cobwebby veil over my left eye…suddenly got up one morning about six weeks after starting LDN and it had vanished…so far no sign of it returning. Fingers crossed that you soon see some benefits. Nina x
That’s great Nina, if I can just get some benefit then it’ll be worth it! I take amitriptyline to help me sleep anyway so fingers crossed I won’t have too many “vivid dreams” - I very rarely ever remember dreams so they’d have to be pretty vivid to stand a hope
