I was diagnosed on Friday with MS and now have an appointment with the MS nurse on Friday 25th May. My consultant said he wouldn’t recommend DMD at the moment as I had only had two relapses, the last being January 2011. But I didn’t have time to explain that I think I’ve had at least had a couple more. My MRI scans show at least 30 high signal lesions. Part of me does wonder if its because of the cost,(I’ve got a copy of the BNF and they are all a lot of money per month).
I’m not even sure what a relapse would be like. All I know is that sometimes I feel reasonably ok and then I get a patch when I feel pretty rubbish for a week or so. The fatigue, numbness, balance etc is always a lot worse then. If there is a chance that DMD would reduce relapses or slow down disease progress then I think it’s a chance worth taking.
How on earth does any one make a decision?
Lynne
Hi Lynne
Congrats and commiserations on your dx - at least now you’re not in limbo anymore and you know what you’re dealing with.
Check out the ms decisions website for info on dmd’s. It also has a questionaire for you to fill in if you want too. Your answers help to whittle down the choices, making it a bit easier for you to decide which one to go for.
When you see your nurse I’d definitely tell her everything and make sure you ask her any questions that you have - perhaps make a brief note of everything you need to speak with her about. An ms nurse is there as your first port of call so try to get as much out of the appt as you can!
I would definitely find out whether your neuro is offering you dmds or not - whether you fit the criteria - it’s not cast in stone that everyone will be offered them.
Go to the appt prepared! Questions ready, and if you’ve already had a peruse on the ms decisions website & decided which dmd to go for (if offered them) then it’ll save time 'cos it can be a bit of a process.
Good luck & let us know how you get on
Debbie xx
Hi I’ve just had a call from my ms nurse today saw her 2 weeks ago, I was offered Copaxone or Extavia, she asked if I had thought anymore about it, its all I’ve thought about last fortnight, so I have went ahead with the Copaxone don’t ask why I’ve really no idea but if it reduces relapses and relapse time then I’m willing to give it a go… Now I’m scared 
x
Hi I’ve just had a call from my ms nurse today saw her 2 weeks ago, I was offered Copaxone or Extavia, she asked if I had thought anymore about it, its all I’ve thought about last fortnight, so I have went ahead with the Copaxone don’t ask why I’ve really no idea but if it reduces relapses and relapse time then I’m willing to give it a go… Now I’m scared x
Don’t be scared, Laine, I
've been on Copaxone since last June with no problems, and I wish I had started earlier.
Geoff
If it helps, the injectable DMDs reduce relapse rates by about 30% on average (some people do a lot better, e.g. me, but they don’t work for some). They also reduce the severity of the relapses that still happen as well as delaying the onset of disability.
Every relapse means more brain/spinal cord damage. As this level of damage accumulates, the body finds it harder to deal with and repairs are less effective. This means that we become more disabled.
If someone has mild, sensory relapses and recovers really well from them, then taking DMDs may not be necessary, but there is no telling when the next relapse will be a monster. That is the reason that I think that anyone who is eligible should grab them with both hands - even if it’s only 1 in 3 relapses that you don’t have any more, that 1 might have been a monster, and those other 2 may be much less severe. However, it is completely up to the individual - there is no right or wrong decision. We all have our own priorities and beliefs.
As Debbie said, check out the msdecisions website. It’s really informative.
Karen x
Thank you Geoff as so far my symptoms have not been too bad Xmas time I had a numb hand for 4 weeks couldn’t hold anything then this year I had 8 weeks of double vision but have not had any pain what so ever so starting DMDs seems scary but as Karen says you never know when a monster will hit… I think I’ve done the right thing and must say I’ve been seen very quickly and everyones been so nice. I have yet to meet my consultant I have an appointment in July to see him. Thanks again folks a wee bit of reassurance goes a long way. Laine x