Well, truth be told, I am struggling. It’s so hard to know if it’s just usual MS playing up or LDN… but all my symptoms are pretty bad at the moment.
I went up to 1.5 ml yesterday and will take same tomorrow, but if still bad I’ll go down to 1 ml again.
No point in listing all my symptoms as it’s ‘all the usual suspects’ and I’m feeling pretty awful.
Anyway I’ll keep on with it as I realise it’s still early days… but so far no easing of anything and tinnitus is loud and dizziness bad.
Don’t let me put anyone off please. Like everything, this drug is different for everyone, lots DO get symptom relief AND it still might turn around for me.
Hi Pat, No email when I came in tonight Was too late to call so will strive to get in earlier tomorrow to check emails then call if I haven’t received one. Hang in there Pat, even if you have a couple of weeks feeling crappier then usual, as you said, it’s different for everyone, so it may be worth it in the end. Thinking of you (and apologies for no paragraphs LOL)! Oonagh Xxx
Well, truth be told, I am struggling. It’s so hard to know if it’s just usual MS playing up or LDN… but all my symptoms are pretty bad at the moment.
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Unless your symptoms usually fluctuate wildly, I would reduce the amount until you feel things have improved and stick with that for at least a couple of weeks. People adjust to ldn at different speeds and you simply can’t rush the process. The majority of MSers do get to tolerate the drug eventually and just a matter of taking your time.
Hey Pat, I’m afraid the LDN exacerbated all my MS symptoms and I had to drop the dose down which didn’t improve things! It especially made my bladder worse which was the one thing I wanted it to improve! I did give it two months, after which I stopped. I feel I gave it all I could take! Hope things improve for you! Teresa xx
Hi. Excuse this if not up to my usual standard… I’m on a new iPad. My laptop died this morning… Anyway I can’t touch type on this and I’m still learning the ropes. As I put on here I had gone up to 1.5 ml on Sunday. I’ve been really REALLY unwell. Last night I had bad spasms, tinnitus through the roof & whole body buzzing. I felt really distressed & swore I wouldn’t take any today. I finally got to sleep around 5am! We’ll in the light of day I decided to keep on it but lowered dose to 0.5. I feel a bit better now thank God. Once again please remember that it is different for everyone so don’t let me put you off. Tired & a bit down in dumps but hanging in here… And got this new toy to play with! Love to all, Pat x can’t find smileys on this x
Teresa want to say that I think you are really brave sticking it for 2 months. I know I can’t stand feeling like this for more than another week! Also don’t know if connected but a blood vessel has broken in my eye and it is bright red and looks terrible. I think it might be cos I am so itchy and keep rubbing my eyes and nose. Love Pat xxx
I do think that it is important for people to say on here if they have not got on with LDN. It is great that so many people find benefit from taking it but it does have another side and it isn’t beneficial for all! As it is the only available treatment for PPMSers apart from meds to manage symptoms, it is worth giving it a go. However, it is sad if it doesn’t work but we must move on if it doesn’t! Hope you start to feel better soon! Teresa xx
Hi, I am a new user. I am 61, and I was diagnosed with MS earlier this year, but I have a very bad mobility. I do read a lot about LDN, I have a sneaky feeling I may benefit from it. However, I feel I should discuss this with a neurologist first, and I rand my MS nurse to discuss this. He was not keen on the Idea, he said they (the hospitals MS team) does not recommend this, and he suggested I try Gabapentin 300mg first, rang my GP and got her to prescribe this. I did not like the looks of Gabapentin, so I never started with it. Maybe I am being silly? I find it very interresting to see about your experiences with LDN, and I hope many people contribute to this thread. Maybe that nurse is right, but I feel “This is my body, and I know best”. I will follow this thread on the side-lines, looking forward to it.