How did you come to know what kind of MS you have?

[flyfarfaraway]

Hi, I just wondered how you guys came to know what 'kind' of MS you had . . . Is there a test that can be done? OR is it just a 'wait and see' type thing and then the doctor makes the decision?

Because I'm just wondering what category I would fit into. I think I'm having more and more symptoms.

[doublevision1]

I was informed by my neurologist that I had RRMS when he initially confirmed my MS dx.  He described how my history and MRI fit the diagnostic criteria:

-Dissemination in space demonstrated by MRI positive for brain & spinal lesions
-Dissemination in time demonstrated by second clinical attack.

Because my symptoms remitted after my first attack, he defined my MS as relapsing-remitting; as opposed to steady progression of symptoms/decline of function from onset without remission. I've had two subsequent relapses since dx and both times, symptoms remitted though with some residual damage after one of these attacks.

RRMS evolves to SPMS when remissions stop happening and there is only progression.

I could be wrong but I think for PPMS this determination is made after sympoms have lasted at least a year following onset.  

I have a different view on this than some others here.  I actually think it is important to have the distinction made as early as possible.  As Alex mentioned, the DMD's that provide some benefit to those of us with RRMS don't appear to work in SPMS or PPMS.  However there may be opportunity for some with these other forms of the disease to participate in clinical trials for new treatments, ie: drug therapies, stem cell.  I would want to take advantage of those opportunities if it were me.  Access to experimental meds may be better than nothing --- understanding the risks that may be involved and also that there is no guarantee of receiving the med in a placebo controlled study, at least in the first phase of such a study.

[Eyesnlegs]

I think that all the replies you have here are eminently sensible. The more I get to know about MS the more it makes me realise that there are more shades of grey than black-and-white.

I have no idea what type of MS I have, initially a few years ago my neuro was mentioning words like benign and mild. When I finally got my definite MS diagnose he spoke very quietly almost under his breath and said I am confident that you have MS and it is probably RRMS.

However, it makes more sense to me that as this disease is so very different in every one of us, that a definition of a type is not as important as how it is treated and how we cope with it. A very wise young girl who was on a fatigue management course with me told me that when she was diagnosed and asked what type of MS she had, the neurologist replied "you have ***** MS", replace the asterisks with your name. For me that seems to be the best way of approaching it.

You have YOUR MS and no one else's, there are various ways of treating the symptoms, the relapses and the progression and you need to work with your neurologist and your medical team to find what suits you. You also need to find your own way of coping with each day and the knowledge of your own MS. Friends and family can help with all of this and support you. The wonderful family on this forum can also support you. But no one can know how this illness really affects you, only you.

So I have learnt not to get hung up on what type of MS I have, I have MS it affects my life, it is progressing, I have good days and bad days, I have good weeks and bad weeks, I have good years and bad years, and that is all I know for sure.

The type of MS only becomes evident over time and as the nature of the monster can change, then so the type of MS can change.

I hope your journey on the rollercoaster is gentle.

Pat x

[coco31]

I think you neurologist looks towards clinical evaluation over a period of time, presenting symptoms and sometimes MRI. My aunt has MS and when I was diagnosed a year ago we really talked about our diagnosis and our symptoms and it was very plain to see the MS does not effect any 2 people the same and it was really hard for me to grasp that. I like things planned and neat - MS does not fit in with the masterplan at all and the sheer unpredictabilty of it is perhaps the most annoying thing imaginable.

For excample: While I have more lesions than her, she has had MS for 14 years and her disability has certainly accumulated where as I have none apart from some visual loss. I think she is secondary progressive now, simply because her disability has progressed without any superimposed relpases for the past 2 years. It has been just steady progression.

As for recovery - again I think this is different for everyone.... I have had 4 relpase in the past 14 months (the most severe was the 1st one) with optic neuritis in the right eye. To look through that eye (even now) on its own now is like peeking through a keyhole. But I have no deficit from any of the other relapses......

[flyfarfaraway]

Thanks to ALL! Very helpful.

[flyfarfaraway]

Hi Suzy, thanks for you comments. Very interesting.

This might sound like a dumb question but when you say 'losses' does that mean that after every exacerbation you just didn't recovery to the way you were before? (sorry but I'm new and need to understand as much as possible)

Thanks so much.

[essdipity]

The huge majority of MSers have RRMS, and some, not sure what percentage, move on to the SP variety. If you've had clear periods with few, very stable or no symptoms, you will fit into the RR category.

If you're not sure about this, your neuro is the one to ask. This becomes important in regard to treatment options, but otherwise it's the same dang disease.

ess

[suzymsgirl]

Hi.  For myself, time became the indicator.  As time passed, and exacerbations increased, (I have had thirty different 'losses' in the nine years I have had Multiple Sclerosis), it became a matter of talking with my Neurologists, and they finally concluded that I had Primary Progressive Multiple Sclerosis in 2009.

I presume Multiple Sclerosis if different for everyone, however, and simply wish you well, as you travel this road.

Sue

[Mike_Shuswap]

To be honest......I'm not sure.

I was dxed the end of March this year, and I don't recall the neuro telling me anything other than MS.

He did prescribe Rebif though, so I'm assuming he figures it's RRMS. Although even when I feel pretty good, I'm far from back to normal since I first went to the ER in Feb 2009.

I think dxing the type of MS is a clinical evaluation type of thing, and it would normally take some time to figure out what catagory you fit into.

Most people start out with RRMS.

Not much help, but I tried.....

Mike