Hi missylala, im on avonex and ive been on ldn prvt script now for 2 yrs i do find ldn makes me feel more positive in myself but i dont think id give up the dmd’s…gd luck with your choise. TC.
choice even!!!
Hi tc, thank you, appreciated! FB
If you’ve made up your mind why bother with a post, also I didn’t mention you the person that posted, I know it is on prescription but if it isn’t available in certain areas etc why risk taking something that has not been prescribed. In general people do moan on here about the NHS that was my point not aimed at you. Why seek the heads up from strangers when the decision lays with yourself?
Hi Missylala
LDN is certainly worth a shot but as others mentioned do think carefully before rejecting a DMD. It looks like it is safe to take both, certainly with interferons and copaxone. I think it’s important to stay level-headed when starting on LDN. A lot of stories on LDN research trust website tend to be given by people who had dramatic improvements but if you google LDN you will find that many people have had modest improvements and quite a lot of had none. It’s difficult not to get excited about something that potentially could bring lots of good changes. But it may not happen and you will feel that you’ve failed when ‘everbody else have had only success’. Do bear that in mind.
Regards
Maryla
I agree with Alison and Val.
Taking LDN is fine if you want to try it. Think very carefully about dropping the copaxone.
I have taken rebif for 9 years and i have had to have a short break from it, because of some side effects. I am scared to be off the dmd as i have seen the damage ms can do without taking them. Loads of people regretting their decision now they have ms damage have spoken on these boards.
I will be changing to another dmd asap! I am not a gambling person!
I have considered ldn in the past but decided its not for me at the moment - never say never!! but…
If i ever decide to give it a try it will be alongside a dmd.
I really hope chocorange (ellie) can make it back to this thread and i hope she doesn’t mind me asking this question…
Ellie can you please explain how your ms has hit you while you took only ldn for 9 years and no dmd?
I think Ellie may change your mind - if she is well enough at the moment to get back here.
Best wishes to you Ellie and i hope you don’t mind my comments - i hope you are managing ok at the moment? ((hugs))
Teresa.xxx
hiya teresa
am more than happy to share whats happened to me…
am i bitter and angry about whats happened? yes-with the original neuro. with current and previous ones-no-definitely not.
will try my best to summerise so bare with me folks…
2005 diagnosed with ms.
2007 same neuro changed his mind (despite symptoms and lesions on mri) stating it was my imagination!
2007 saw 2nd neuro who confirmed original diagnosis. he left shortly afterwards so never saw him again.
original neuro also moved on and i was left to get on with it.
there was no neuro locally for a while. i had read re ldn and decided to take it with gp knowledge but he wouldnt prescribe.
i had a few relapes over the next few years which were always intense but very short lived. i continued to work and raise my 4 kids on my own.
then bang 2 years ago as regulars of the board will know. i had a huge life changing relapse from which i have never recovered. doubly incontinent, whole of right side weak and yet heavy, lost permanent sight in left eye, speech affected-still is. i now use a powerchair and have carers in.
when big attack in 2012 gp referred me again to new 2nd neuro. i think i just got lost in the system cos i was doing well (rightly or wrongly!). so the 2nd neuro did his best to pick up the pieces-i did like him cos he listened and i trusted him. he started me on tysabri and let me continue ldn. however life was becoming very complicated to co-ordinate my care cos i was between regions/countries so i decided to come back to area of original neuro where there was a new efficient neuro-have seen him a couple of times. again. he is doing what he can in the aftermath.
so i never had dmd’s-was never offered them. my choice wasnt between them and ldn.
would i do things differently now? the truthful answer is no. because of the state i am in now i believe its not beneficial for to to focus on what could have been. that would only make me angry and bitter i guess. so i have spent many months practising patience and learning to live in the now cos i know only too well it can change in a matter of hours. which i appreciate wont assist u to make a decision re ldn! but i have had to change my whole outlook in a way that doesnt encourage guilt cos thats a downward spiral…i did get down a couple of steps (every pun intended!) but soon realised that wasnt the way to go!
i would like to finish this on a positive note-its my grand daughters 1st birthday and shes visiting soon-i cant wait to give her a good sniffing!
ellie
Thankyou Ellie!
You are such a positive person! It’s always lovely to talk to you. Enjoy your grandaughters Birthday! xxx
I was diagnosed the same year as Ellie - 2005. I went straight onto the dmd and stayed on it until now where i am forced to have a break before changing to something else because i am not tolerating it any more. I am gutted!!!
I will be on another dmd very soon.
I have no progression at all. I have not relapsed on rebif.
I am not much different from when i was diagnosed.
Be kind to yourself - and make the right choice!!
There is no going back - ms damage cannot be reversed! (not at the moment anyway!)
Teresa.xxx
Hi Guys Apologies for not being on here recently, busy with various appts. Will be back on here later today. FB
Teresa and Ellie
Thank you both very much for your honesty, and positivity!
I appreciate now that perhaps I was a bit “gung ho” about LDN, and I am still very positive about it, but I shall remain on Copaxone for the immediate future - whether or not I start LDN.
I have appreciated all points of view, and I am sincerely considering all of them, but I apologise to anyone who has felt irritataed, annoyed or upset by any of my posts. That certainly wasn’t my intention
Thank you all again, it’s been a very valuable forum for me.
Many thanks
FB
Hi FB!
I would like to just say that i’m sure nobody here is irritated,annoyed or upset by your posts. xxx
This subject comes up frequently on these boards and it ALWAYS brings up a ‘lively’ debate. To be honest i thought the thread was pretty mild this time!
People on here are just wanting to make sure you know the full facts about coming off copaxone and relying on ldn to keep your ms stable.
You now have all the facts. The decision is yours to make.
I wish you well and i’m sure that goes for everyone here.
I hope this ‘lively’ debate has not put you off being on here.
Best wishes
Teresa.xxx
Phew.
A big sigh of relief from here.
You have nothing to lose by trying the LDN but it was potentially disasterous if you came off the Copaxone.
I sincerely hope the LDN helps you but there are no miracle cures when it comes to MS. Much as we might like there to be.
Btw I wasn’t irritated by your post. I apologise if I gave that impression, it is my writing style and I tend to be economical with my words
i just wanted you to be aware of the limitations of LDN.
Good Luck!
Anne
Hi Anne & Teresa Thank you, I was probably being hyper sensitive too (something else that’s become worse with this MonSter!). I do appreciate your words - it does mean a lot to me. It’s not put me off being on here - but I will think more before I post - and will try not to be so blinkin’ sensitive, lol! Thanks again girls (and everyone else) Fran x