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Secondary progressive MS?

Anyone with secondary progressive MS? If so can you tell me a bit about how long you had RRMS beforehand and what changed when you went SPMS?
I have been reading up on things and I think I am in the secondary progressive stage. Has anyone heard of the Kurtzke disability status scale? This is one of the things our neuro's use to determine what stage we are at. I am coming out at 5.5 possibly 6 :(

I am newly diagnosed BUT have definately had it for at least 12 years. I know every story is different so not wanting to know things like....how long does it take before you become SPMS....I am looking for personal stories and how things changed for everyone.

Thanks in advance x

Yes I recognise some of these things and have been told I am S/P. I am still allowed to stay on Betaferon though as they recognise that I probably will still have relapses. I am finding harder to get around, my walking is very slow and I tend to use a stick indoors as balance and diziness seems to be fairly constant. Like you; I have not been diagnosed that long (coming up 5 years) I definitely had a relapse in 2000 and a possible one back in 1989. My neurologist has taken note of these and even though I didn’t visit the doctor until 2000 he has recorded them as relapses.

For me it has been a gradual decline. From 1989 - 2007 MS hardly affected my life, as I always recovered from the relapses. For the past few years things have progressed but hopefully it’s quite slow. I get around in my electric buggy and don’t go on trips without a wheelchair these days. I believe I was tested at 6.5; 2 years ago. Also the last couple of relapses have not gone away as I would have liked. I’m fairly incontinent but am hoping my MS nurse can come up with some help, I’m seeing him tomorrow so keep your fingers crossed for me.

Wendyxx

Hi I have just googled it and it makes scary reading, perhaps sometimes we worry too much about what may happen I don’t know? When I was first dx I needed to know everything that I could find about ms but now I try and not dwell too much about what the future might bring. Sometimes when having a bit of a rough time I do get scared of what may happen but then think there is nothing I can do to change things. Hope you find some answers take care. Karen

Hi,

In November 2011 I was dx with SPMS. Up until then I had no idea at all that I even had rrms. From the late 60's I started getting symptoms and have been in and out of hospital over the years with no dx. It wasn't until I saw my rheumy who noticed I dragged my right leg and I had myoclonic jerks that he advisd me to see a neuro and advised me to get my gp to refer me. She did and after many, many tests, MRI, VEP etc that she came straight in with a dx of SPMS. I was shocked to say the least and yes my life has changed. I use a stick, a mobility scooter but I don't worry about the future but enjoy everyday that I can do some of the things I used to be able to do. My outlook is don't worry about what could happen, just enjoy each day the best way that you can and let the future take care of it's self.

Janet

x

I'm not sure you're right that the disability scale is used to determine "what stage we're at".  As the name suggests, what stage in terms of disability, yes, but not what type of MS we have.

An unlucky RRMSer could be seriously disabled after just one v. bad relapse, but that would not mean their diagnosis should be changed to SP.

The key is whether the pattern is still one of relapses - from which you recover to a greater or lesser extent - or whether it has changed to one of gradual deterioration, with few detectable relapses - or none at all.

Tina

 

Thanks for your replies.

Anitra, I didn't mean stage as in MS, I meant disability (worded it wrong) as I know everyone is different. I know most of my symptoms have no gotten any better. The sensory ones come and go but the main ones ie. fatigue, constipation, urinary trouble, congnitive (sp) problems, arm and leg weakness never improved and are gradually getting worse. Yes the fatigue etc gets worse if I am sick or have a UTI but I NEVER have what I would class as good days.

Janet, I agree with you about staying possitive. As much as I am the type of person to always be reading into things it doesn't scare me. I don't worry about the future, its more a case of wanting to know what may happen and be ready for it.

Basically I would say I started having attacks 12 years ago. My only symptoms that I can think of were fatigue, severe constipation and urinary frequency. These were all put down to having a young baby. I used to go to the doc in tears about how tired I was, that it was dangerous for me to be on my own with my child but no one listened.

Then last Jan is when it really kicked off. Had my first "real" relapse that was mainly sensory. Was numb from right foot up to my chest amoung lots of other things.

Then in June I could not move my left arm. It just hung limp and had the MS hug. The hug went but my arm improved slightly but not fully. During this relapse my right leg was greatly affected too. I could only walk a very short distance before it went weak and would buckle. This never got better.

So I now use a stick for out and about (but dont go out much as too fatigued). I have most of my face twitching most of the day. My feet burn all of the time, memory awful as is my concentration. Fatigue is always there and started Modafinil but doesnt seem to be doing anything for me.

 Basically what I am trying to say is that I just seem to be getting slowly worse, don't have good days but do have days when things are worse due to over doing it or sickness. 

 

Things don't change 'cos the neuroligist says you are secondary progressive.You still have your own unique version of MS,but THEY need to earn their fabulous wages by writing things down. There are lots of different treatments which the drug companies put in the sweetie cupboard specially for those renamed as SP.

 

Medical professionals have to quantify things, but classifying MS as Benign, Progressive,Relapsing Remitting or Secondary Progressive(apologies if I've left anybody out) when there are about 200,000 people with MS in the UK all with their own version is [filered coffee].

 

The only thing that changes when you are told you are SP is that it looks more impressive to anyone in the DWP reading your paperwork.I was told I was SP after I had a couple of 'my little hiccups' within nine months and this was five years ago,about five years after diagnosis,and was a marvellous reason for an -iss up.

 

Wb

Oh and just to add, the scale may not be accurate of determining stages but it does say on other pages that USUALLY (using that word loosely) people with RRMS have a score of 4.5 or less x

Hi again,

Maybe I misunderstood.

You seemed to be saying that because you had reached such-and-such a level on the EDSS, that now meant it's more likely you have SP?

I don't think that's true, as the two things aren't closely connected.

It sounds, from your description, as if you are still having relapses.  Recovery is incomplete, and you are left with some residual damage - which, unfortunately, tends to be the way it goes, in the long run.

But I still don't think the cumulative damage, in itself, is evidence that you must now be SP.  This could simply be the effect of many relapses over the years.  A relapse may be followed by complete recovery, but isn't always.  If you do improve, just not completely, it's still looked on as a relapse, and not "progressive" MS.

I don't have days when I feel completely well, either.  Various things keep hurting, or feeling "odd", or just don't work as well as they used to.  I still don't see this as proof I've become "progressive", even though, like you, I'm convinced I had MS for many years before being diagnosed (10 or 12 is not unlikely).

I suppose I might already be SP, for all I know.  If I'm right about how long I've already had it.  And I haven't had a relapse for ages...or not one I was really sure about, anyway.

But anyway, as Woblyboy says, what's in a name, really?  Slapping a different label on it after a certain amount of time, or a certain pattern is observed, doesn't mean the MS now knows what it's called, and has to behave accordingly.  You still have what you had yesterday and the day before.

It doesn't "go anywhere" because it's been rechristened.

Tina