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Gone Progressive

Hi Guys and gals.

Seems the bad news keeps coming for me, I have found out results of MRI from 2 weeks ago and have had worse news ever.

My MS has gone progressive only mildly but still progressive is not good. What does this mean? will everything get worse and worse or just never recover from relapse i recently had.

Hi there,what this means, is that you will wake up tomorrow and your very own version of MS will be the same.What the neurologists have done is to fit you and your MS into their system of categorisation.When I was bumped up to SP six years ago I was offered and took Mitoxantrone therapy followed by Copaxone.There appears to be geographical variations in treatment and drugs,so I have no idea what is next for you.I have never had an NHS MRI and will never get one as it is regarded as a purely diagnostic tool where I get my annual 15 minutes of fame.

I think"Never recover" is a bit strong and what happens will be personal to you,but in all probability any recovery will probably be slower than it once was…There is a fair chance that I’m wrong and your body will have its own ideas.However you looked upon your MS has only changed because of what the neurotic has said,so keep doing what you do.

Any road up, enjoy the weather if you can and try not to needlessly stress

Be lucky,

Wb

Wise words from wb. Progressive MS is as varied and unpredicatable as any other type of MS. My diagnosis came straight in with SPMS so it is all I have ever known. Progressive MS can and does plateau so the future is by no means certain with it.

Try and not worry too much, easier said than done I know.

Nothing is certain with this bggr.

Thanks woblyboy for your comments, like the new reference to neurologist. Neurotic sounds a lot better. Created a smile which is what counts.

Just to let you know (and people on here know I am a bit militant on this) a diagnosis of Progressive MS (Primary or Secondary) means that you never get much function back after you lose it. If you see anything more than a slight improvement, then the doctor has diagnosed you incorrectly and the doctor should have this pointed out to them. It is good to keep notes of the relevant functions, with dates. Then, if you do see noticiable improvement, in six months or a year you can go to the doctor and explain their mistake (very politely). The reason this is worth doing is that, in general, you will only be eligible for dmds if you have RRMS.

A little backstory on this. One of my friends lost all the function on the right side of her body in 1998. She regained most of it quite soon afterwards but still had some problems and was quite depressed, for reasons unconnected with the attack. She was diagnosed with PPMS, a diagnosis she still holds today. She has had other ups and downs, but not so many ups in the last few years and she probably has SPMS. She never had PPMS though. The doctors (and particularly the terrible neurologist she saw at the time) don’t always get it right.

Interesting Sewingchick.

One bit of research (I think on Barts Blog but not sure) is based on idea that PPMS might actually be people who have had extremely mild RRMS that was never dx. Then it has become SPMS and symptoms were then bad enough to seek medical help and referal to neuro.

As many people like myself with PPMS have had years of ‘odd symptoms’ I think there might well be something in this.

Pat x

That is something I have wondered myself Pat, particularly as due to a combination of circumstances my initial diagnosis was SPMS. So I probably had mild RRMS for years and without a documented bout of ON would have been diagnosed with PPMS.

I don’t know much about this but I have a vague idea that there are certain features of PPMS that make it a distinct disease. Can’t remember what though.

However I would like to clarify Sewingchick’s post. Even with progressive MS, I find some symptoms come and go, particularly what I call the annoying ones e.g. itching.

Also recovery times from relapses vary and some recovery can take a long time so just because there is no apparent initial recovery, it doesn’t necessarily mean it is progressive MS.

MS is a slippery bggr, there is no doubt about that.

Sewing chick is right about entitlement to DMDs being dependant on diagnosis so it is important to not be incorrectly diagnosed with progressive MS!

It is interesting. The other thing that makes it important is that the doctors are trialling Tysabri for people with SPMS. If it helps them, then it will really matter whether everyone who has been told they have PPMS actually has it or whether some (or all) of them have SPMS that wasn’t picked up when it was RRMS.

Agree entirely with Wb.

You haven’t got a different disease the day after going to the hospital, than you did the day before, just because a boffin has made a pronouncement over it. “IT” doesn’t know what’s been said!

I’m not sure quite how a diagnosis of “mildly progressive” can be given from an MRI anyway.

The switch from RRMS to SP isn’t a black and white thing. You don’t go to bed with one, but wake up with the other. In general, there is a tapering of the number of relapses, and a tendency still to accrue disability, even without obvious relapses. But the two aren’t mutually exclusive. Some people with RRMS have always sensed slight gradual deterioration, even when they’re not relapsing (I’m one of them, but it’s very slow, touch wood). Others with an SPMS Dx continue to have the odd relapse.

So really, it’s not like flicking a switch - it’s a continuum.

A slight aside, but following on from what Pat says, I do think it could be possible for someone not to notice they’d had relatively benign RRMS for years, and hence only to be diagnosed when it was already secondary, or becoming that way.

I’m still RRMS (officially speaking, at least, until I’m told otherwise). I was diagnosed in the latter half of 2010. I’ve always been sure I’d had symptoms since at least 2006, without suspecting anything sinister. Recently, I stumbled on correspondence dating back to early 2004 (about 6.5 years before diagnosis), complaining that my legs were sore, think something’s wrong with me, blah-blah.

If there’s anything in this, and it’s not just coincidence, that would mean I’ve now had it over nine years, rather than the 2.5 on paper. Which is rather comforting, in a way, as nine years without stick or wheelchair sounds a lot more encouraging than two!

But I definitely think there’s mileage in the theory that milder RRMS cases (I hesitate ever to call it “mild”, but you know what I mean) could have been going on for years, before the person notices anything’s the matter. The more time goes on, the more I’m uncovering evidence from years ago, that points to me already having it back then.

I don’t think diagnosis was the start at all. I think it was the culmination of years of unsuspected illness.

Tina

x

Sorry Annie, I was typing my post as you were and it reads oddly coming after yours instead of Pat’s. I was saying more or less the same thing as you. Except that the diagnoses of the progressive types of MS are really slippery and the definition of a relapse is slippery. Here’s the definition of a relapse from the site we’re on.

Hi again, yes Tina I also look back on many years of symptoms that for me were always put down to anxiety… esp episodes of vertigo… in fact I remember going to a GP in my early 20’s with bad vertigo… that was 30 years before dx! Of course might not have been in any way connected to MS and it went away after a couple of weeks, but there was never any explanation except ‘anxiety’. It did return though and I had many episodes of it over the years, all lasting a few weeks.

AnnieB and Sewingchick, I think one of the main differences with PPMS is more spinal lesions, but not for everyone… I have more on brain than spine.

I think also because PPMS does not respond to any DMD’s… but as this is the general belief neuro’s don’t normally try them with someone with PPMS. I have never tried a DMD… so who knows?

As with SPMS, symptoms with PPMS can come and go. Even mobility can change by the day, and the annoying ones like itching come and go all the time.

Pat x

Hi all,

Thanks for comments and advice my original MRI was in 2007 and then one recently as had a pretty major relapse 3 mth ago which does not seem t be recovering at all.

Seems my DMD is being stopped and tysabri has been mentioned but have been asked if I would like to try new tablet but tha is odd as i read it for RRMS, I have read it has been tested on a few PPMS people but not in uk. just fed up and tired Doc put me on ADep today and then told me 2 weekd before they work LOL.

I think I’m as confused as you! You had a major relapse just three months ago, but now they think it’s “progressive”? This seems a bit contradictory, as in general, people with progressive types have fewer relapses, or none. So if you had a big relapse just recently, it would be hard to tell to what extent you might still recover (I’ve had one lasting a year), or that it was “progressive”.

It’s important to remember that even RRMS, despite the name, IS still a progressive disease - but progressive with a small ‘p’, so it’s a description, not a diagnosis.

Are you sure they didn’t just mean it is progressing/has progressed, rather than actually diagnosing you with Secondary Progressive? As far as I know, neither Tysabri nor the new tablet (I’m guessing it must be Gilenya?) are routinely prescribed for SPMS, although they are being trialled. But surely they’d have told you if it was part of a trial? If it isn’t, it tends to suggest they believe you still have RRMS, but that it needs more aggressive treatment.

Tina

After reading all of these comments I’m now well & truly confused :frowning: I was diagnosed 1994 with RRMS and then just before Christmas just gone was told I’m now SPMS. I’ve suffered many minor relapses but then had a major relapse 1998 where I lost all feeling from my chest down this lasted about 18 weeks when most feeling came back, apart from the legs which were left heavy (was told that this was probably nerve damage!!) however I’ve never fully regained feelings in my legs and prior to Christmas just gone they now feel like they have tight bands around them? Ontop of that I lost the feeling between my legs :frowning: again this is still the case. Does that mean as now SP I will never recover?? Confused.com :frowning:

The more I read on here about people’s experiences the more I feel that the Post Code Lottery affects,terminology,courses of treatment and availability of MS Services.I donot want to start a Civil War but is it possible that the drug companies are influencing the terminology applied 'cos of the products that the PCTs are buying and the Neurotics are fitting peeps to the stage which fits an available drug.

How very dare I suggest that, but it still has no effect on the fact that we all have our own variation of MS and THEY have to categorize it so if a type of drug is available it can be administered.At the moment MS is worth £7-8 billion globally a year and who will get in the way of that?

Wb @confused.synical

Here’s what I understand to be the truth - it is somewhat different from the stuff on this site (I think the MS Society needs to update their definitions, especially the SPMS one I quoted above).

Around 85% of people who are diagnosed with MS are diagnosed with RRMS. When they are diagnosed, they have had a few recognisable attacks, where they have lost function but then regained most of it later. As the years go by, most of these people will carry on having attacks and they will lose more function during the attacks, which they will only partially regain when the attack finishes. They might be given the interferon-type DMDs, which, on average reduce the number of attacks by a third and the accumulated disability by the same. Some people seem to respond better than the average, some people worse (no surprises there). If someone is not seeing much effect from the interferons, or if they haven’t tried them but their MS seems to be progressing fast, they may be offered Tysabri or (more rarely) Gilenya. The first of these reduces relapse rate and progression by, on average, two thirds, the second by a half.

The neuros use MRI scans to diagnose MS - there is usually (but not always) a distinctive pattern of myelin deterioration in people with MS. They use gadolinium enhanced MRIs to check if people have active lesions as this chemical shows up inflamation. If the neuro sees inflamation, s/he will diagnose RRMS. The only problem with this is that neuros are not very careful about making sure that the person has the MRI while they are having a relapse. From what I have read, the inflamation lasts six weeks or less from the time of the relapse. So it’s possible to have an MRI which shows no inflamation and to be diagnosed with SPMS or even PPMS when you actually have RRMS and should be eligible for those lovely drugs mentioned above.

For Bambi19, if you have gained back a lot of the feeling in your chest, you almost certainly have RRMS. If I were you, I’d be trying to get given Tysabri, if you’re not already on it.

For Bambi19, if you have gained back a lot of the feeling in your chest, you almost certainly have RRMS. If I were you, I’d be trying to get given Tysabri, if you’re not already on it.

[/quote] But I’ve never regained full feeling in my legs and they have deffinatley got worse over the last 3 yrs. Had beta-inteferon 1999 for just over 12 months but was having more relapses on it than off it, so went onto oral drug aziathoprine took that for 2 1/2 yrs but then all my white & red blood cells were at dangerous levels so was taken off that too. So still not sure if neuro is right by saying I’m now SP and not RR whichever it is I’ve still got it & its still as unpleasant now as it was when I was diagnosed back in 1994. Sue x

And they wonder why we get depressed with this condition hell even i am confused now.

MS is varied and no two people will have the same experience with it.

At the end fo the day it is your MS and you have to live with it. Apart from access to DMDs, the label is irrelevant and it’s really not worth worrying about.

Neurologists use a range of criteria to diagnose MS and it is possible to have a clear MRI and have MS so not even that is a reliable diagnostic tool. I suspect that two different neurologists may even come up with two different diagnoses. It really is a slippery beast.

It depends whether you think the good DMDs (Tysabri and Gilenya) make a difference, and how big that difference is. When my neuro first suggested I go on Tysabri, he said “If you carry on as you are, in five years you’ll be using two sticks and in ten years you’ll be in a wheelchair. So we’re not going to let you carry on as you are.” If he was correct, then it was very important that my MRI showed active lesions and thus that I still had RRMS.