Type of MS

Everyday living
1

Hello,

When I was DX I wasn’t told a type but everything I read seems to to have MS categorized. Is it unusual not to be told a type?

Thanks for any info.

Jon.

2

Hi Jon,

I was diagnosed in Oct 2012 and told that I would be treated as RRMS unless anything changes basically see how it goes.

I last saw my neuro in April and he was pleased with my progress, but now I’m having a relapse, my ms nurse isn’t too worried.

From what I’ve read it all seems to be pretty much wait and see.

BeckyX

3

I was told I had MS about 5 weeks ago from my spinal MRI and general symtoms. The Neuro said it was most likely RRMS as that’s most common but it might be progressive.

I had my head MRI and I see him again next week, I’m a bit nervous because I’m not sure what to expect… I’m beginning to understand why being ‘in limbo’ is talked about a lot, not just prior to diagnosis!

For once I’m really hoping to be common :wink:

Sonia x

4

I’ll get into trouble for saying this but the lines between the different types of MS are pretty blurry and I’ve never seen that having your MS categorised is very useful. I have seen seven different neurologists since I was diagnosed in 1999 (I moved about a lot) and none of them ever gave my MS a label. It looked like slow Primary Progressive for the first eight years but then I started to have relapses and to go downhill much faster. I’m glad I was never given a label because it meant I was eligible for Tysabri. I wouldn’t ask for a label if I were you - you don’t gain anything by having one and you might lose the chance to get some drugs that the progression of your disease demands.

5

Hi Jon, I was dx in Jan 07 and the type of ms wasn’t mentioned. Jan 11 was when things changed gradually, with My Left Foot dragging and ms physio said it was ppms. Ok, my problems are slowly getting worse, but a neighbour who’s had ms for 20 years is convinced that it’s not ppms I’ve got. I’ve got lots of symptoms and my general attitude to specific exercise is that I can’t be bothered, John.

6

Hello there Jon,the thing to remember is that you have your very own version of MS.There will be broad similarities to other people and the Neurotics’ ‘model’.As for not being given a type it may be you don’t fit exactly the Neurotic’s ‘model’.

I reckon the thing to do is to continue what you are doing,do whatever pleases you,but keep an eye on symptoms.A good relationship with your GP and Neuro’s secretary is worth having.I’m synical and think that people may be given the badge which fits the drugs that are available.Sewingchick has said it right,

Be lucky,

Wb