It’s not about people agreeing with me - it’s points of view from all aspects, which I am taking on board. FB
[quote=“Missylala”]
Hi Zoe
I know that a relapse is still a possibility - but I wouldn’t necessarily say it’s a definite. Even on DMDs a relapse is still possible.
At the end of the day it is a very personal choice really, but I think this is really worth a shot.
FB xxx
[/quote] A very personal choice, as you say. I think that much depends on one’s perspective. An MS old hand like me whose MS bared its teeth early and showed her what it could do will tend to think one way; a person for whom the predations of of uncontrolled RRMS are still more of a theoretical possibility than a bitter fact of life might see thing another way. And both those people might think that the other one is a little bit bonkers! Ah well. Good luck with whatever you decide. Alison
Thank you Alison - I do know where you are coming from. Much appreciated. FB
But why would you take something if it isn’t prescribed? don’t get it myself! People moan about the NHS then go buy something that hasn’t been prescribed bizarre!
I’m not moaning about the NHS, and LDN is available on prescription.
1 Like
Hi (again) - I was (and probably am still) and LDN advocate. I had a long interview with Linda Elsegood about how to get LDN in Spain, to help people who live in the south of Spain (I don’t live there).
LDN isn’t used world-wide, despite what many people have written on various sites. It doesn’t exist in Spain, which makes it a very cheap drug, as the LDNer has to make their own.
After 14 years on Rebif 44, I have to say that none of my relapses whilst injecting Rebif had been as bad as the 2009 one. I was very bitter at the loss of so many months of mobility and quality of life.
However, I did go back to LDN+Rebif. There is no evidence to support the opinion of commentators, especially on the facebook page that you can’t take both together.
There are people who post on here who are on Tysabri and LDN.
It’s your life and your body, but relapses are brain injuries. It’s never worth the risk. You could end up permanently disabled.
Managing your MS is difficult and in fact, I was about to start a thread on the absolutely miraculous improvement to my mobility since starting Intermittent Fasting. Diet has always helped me overcome my worst symptoms. I stopped eating gluten, cut out sugars and it was like I’d been given a new brain (this was in 2006/7).
My neuro could hardly believe the improvements. Eventually he said, ‘well, whatever works!’.
I’m starting Fampyra tomorrow. Looking at the possible benefits, they resemble the improvements to my quality of life after starting LDN. As I wrote before, it’s a real shame that LDN stopped working.
Hi Missylala, I myself have not tried LDN but would love to try it . Based on my sister in law who has M.E and felt her legs are not heavy anymore , and she doesn’t need to take tramadol or dihydrocodeine any more . A symptom I have 
and the fact the she knows a 70 year old man with m.s and he has taken this for a couple of years and takes nothing else including even taking pain killers as he feels the LDN also deals with the pain . Would I be able to take LDN while taking Gilenya ( fingolimod ) please let me know what you think thx Fiona x
Hi lapreguiceira Thank you for your recent post - I really appreciated it, and totally understand what you’re saying. I’m not writing off DMDs totally, and I will carefully be considering my options along the way. I really do appreciate your honesty, thank you. FB
Hi Fiona I really don’t know about Gilenya and LDN - best checking out one of the LDN websites for further information. Cheers FB
Aim PPMS and took LDN for two months in 2012. I thought I should give it go as there is nothing else for us PPMSers. I was particularly hoping that it would help my bladder problems as they have dragged me down at times. Anyway, LDN seemed to have quite a negative effect on me, especially my bladder. This got much worse during this period and when I decided to come off it I had to start self-catheterisation! I’m not sure if that was a coincidence or not but it certainly put me off! If I had the choice I would rather go for a properly trialled MS drug! Hth, Teresa xx
[quote=“Val”]
…bear in mind that an MS relapse can floor you in an instant. It’s not just a bit of numbness or tingling. You can wake up tomorrow unable to move, or see, or swallow or get to the bathroom, go to work, look after your family… Think very carefully about stopping a medication that is proven to reduce relapses that do things like that.
Hi Teresa
I know it doesn’t work for everyone - and I am certainly sorry to hear that it had such a negative effect on you - very disappointing.
I am very much keeping an open mind on this, and will obviously be assessing the situation after a few months, but I am feeling positive for now.
Thank you again.
FB
i take tysabri and ldn. ldn for 9 yrs, tysabri for 1.
will pm soon-am struggling to see and type just now… ellie
My apologies Val and lapreguiceira I’m mainly using my phone at the moment, please excuse any confusion in my replies. Thank you to both of you again. FB
Hi Alison Thank you for your candid reply - I appreciate your honesty. FB
Hi FB I have taken LDN for 8 years now started on 1mg per day and eventually went up to 3mg. Did try 4.5 but this upset my stomach. I cannot take any other drugs for MS and i have tried them all. I find it helps with my fatigue and I have no cognitive issues, i get this via the NHS , I orrriginally went to gp well armed with information, she said as long as you dont sue and i have been on it since.
trish
Hi Trish I am seeing my GP tomorrow - perhaps he will say the same as yours ! Thank you FB
I’ve read all the comments with interest, and am still swayed towards the LDN route. I would like to cut out any other medication and just take my Rebif 44mg with the LDN. Can this be done? Other medication I would like to cut out is the Pregabalin and Carbamazipine. I wonder if it’s possible? Every MS sufferer is different and mostly everyone has different symptoms and reacts to different medications in various ways but hopefully I find a combination that works and everyone else finds something suitable for them.
Hi Chewitt14 My advice would be to check out the LDN Research Trust website - full of useful information. Well worth checking it out. Cheers FB
The medical advisors to the ldn research trust confirmed years ago that the drug can be combined with DMD’s.