The 2 year rule?

As a person who is undiagnosed after 1 attack, why is there a two year rule for having another one and then you would get offered treatment? Is is because they would expect you to have another attack within 2 years if you are going to have one at all?

hi don’t really know about the 2 year rule but i was 15 months between first and second episode which confirmed ms for me…but because my relapse was mild i wasn’t offered DMD’S so i’m still on a cocktail of pills…

baz

I don’t know exactly how NICE came up with the DMD eligibility criteria, but the main two are having a diagnosis of MS and having had at least two “clinically significant” attacks in two years. The reason that they don’t give them to everyone with RRMS is purely and simply about money. NICE do a cost benefit analysis and decide how bad someone’s MS needs to be for the cost of DMDs to be worth it. Somehow or other that led to the two disabling/debilitating relapses in two years rule. The rule applies at anytime after diagnosis although I think some PCTs make it harder. So in theory, someone with a first attack in Jan 2012 who has a second attack before Jan 2014 (and both of these are clinically significant) would be eligible for DMDs. If their second attack wasn’t until after that, they may not get prescribed DMDs until they have another attack, IF it’s within two years - etc. There have been lots of studies of what factors influence who has second attacks and when they happen. Some of the things that increase the chances of earlier second attacks are number of lesions, recovery from the first attack and where the lesions are. However nothing is set in stone - even someone who has a devastating first attack and lots of lesions has a chance of never having another attack. The uncertainty doesn’t stop with a diagnosis though - no one with RRMS knows when the next relapse will hit. But living in fear is pointless. Planning for the worst, but making the most of NOW is the best approach, in my opinion anyway. For example, my next house will be my “forever” house so it will be a bungalow with wide doors. I may never be in a wheelchair full time, but I’d rather not have the hassle of moving again or having alterations made. And once I’ve moved in I will put all thoughts of wheelchairs right out of my head! Rather a fuller answer than you probably wanted! Sorry! Karen x

Just watch out you do not get caught by the rest of the rules, either.

Two years applies after you have been diagnosed, unless your notes make it very clear that the first attack was due to the MS. Individual Neuro’s can sometimes start the DMDs on the second attack, regardless of the date of Dx. One or two people here have been lucky that way.

Advice from my first Neuro was:
Any event/bad signs/whatever, make a note. If it lasts for more than a week, get on the phone! This does make sure that anything serious (whatever serious means) gets recorded. If it is recorded, then you can check yourself against the qualifying criteria.

Just remember that the criteria work at the other end of MS as well. If you get graded above 6.5 on the EDSS, if you can no longer walk the required distance, THEN you maybe no longer qualify, and the DMD gets withdrawn.

Geoff