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LDN ? (refused DMD's)

Hi Everyone,

 

I wondered if anyone could give me any advise with regard to LDN.  I have been told by my neurologist that I am not entitled to any DMD's as I have not had any significant relapses within the last two years.  I have had minor relapses but I was on a trial drug which I believe has masked my symptons.

 

Can anyone give any advise on pursuing DMD's too.  Its all making me very depressed

 

Thanks for all your help

Your best bet is to read the anecdotal information at www.ldnresearchtrust.org and see if you think it can help.

Please ask if you have any specific questions.

I have no experience of DMD’s, but sure you will get plenty of good replies.

That is terrible! Surely they can’t apply the normal rules if you had been on a trial DMD?!?! Effectively they are saying that you need to have two disabling relapses to get onto a DMD, but if you were put onto a DMD now, you might manage to avoid those relapses and any permanent effects!

What was your MS like before you started on the trial drug? If you’ve gone from more severe relapses to minor ones, then the drug is almost certain to have had an effect. Which means that not being on it is almost certain to see the return of those more severe relapses. Definitely best to avoid! And an argument that your neuro should agree with! After all, it’s their job to keep us as well as possible.

What have the results of the trial been? For example, if you were on fingolimod, then the neuro can hardly argue that it had no effect on your MS. In which case, your MS is likely to get worse now you are off it. DMDs are about preventing a patient from becoming disabled - if your neuro can see that being off DMDs will likely result in disability, he should be getting out the prescription pad!

It is unreasonable to count the years you were on a trial drug in the criteria for DMDs. At the very least they should take those years out of consideration - look at the years before you started on it.

My advice: get your GP involved. Get him/her to write to the neuro for an explanation for why DMDs have been refused (using the above arguments, and anything else you can think of or others on here suggest). If the neuro won’t budge, take it to PALS.

Good luck.

Karen x

hi 

I'm on LDN have been since April 2010, I've had to get it myself, but my neurologist does know I'm on it, since October 2011 I have been on daily copaxone injections,

I had sent the LDN trust an email to ask if they would both be ok at same time they said yes, if not I would have stopped my LDN.

 

hope you find the answers you are looking for.

 

Al x

HI

 

Thanks everyone for the replies, I am going to go back with these points to the neurologist and then to pals if I get no joy.

x