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Some questions

Do the position and number of ‘lesions’ we may have in our brain/spine have any relevance to our level of disability.

Could a radiographer? look at a brain scan and note with some accuracy what parts of us would be ‘disabled’ without seeing us in person?

If we have a remission do the lesions disappear?


Why do we have the categories SPMS and PPMS when looking ahead they’re the same thing?


In RRMS do we ever really remit or do we have periods when we don’t feel as bad as usual?

Hello all . I have just joined and I look forward to hearing what’s happening with everyone x

Ok, I’ll have a stab at your questions. What follows is my impressions of what I think is the case, not by any means fact.

I suspect that the lesions in our brains are related to the type of MS symptoms we experience and their severity. The reason I think this is because if we have lesions in the spine, it does play a direct part in the type of symptoms we have. So it would stand to reason that the places, size, etc in the brain where lesions occur would have a direct correlation with symptoms.

If I’m right about the above, then you’d expect a radiographer to be able to pinpoint the areas of the brain that are affected, and thus the areas of our bodies that show symptoms.

I don’t think lesions disappear when in remission. My thoughts about lesions is that they are more or less scars left by inflammatory activity. But in this I could be completely wrong. This one is a guess on my part.

I believe that the categories of SP and PP stem from different types of activity. To be diagnosed with SP, you have to have had RR first. Even if you weren’t diagnosed with RR, but immediately diagnosed SP, the RR phase has to have been there. Recently in a letter from my neurologist, he seemed to have been saying that I was now SP, and thus ‘no longer in an inflammatory phase’ of the disease. This seems to indicate to me that the RR phase is where the majority of the damage is done with the RR/SP type of disease. So in the SP phase of the RR/SP model there would be most commonly be no further inflammation. Whereas the PP type follows a very different trajectory.

If this is correct, then the damage done to my CNS during the RR phase will now have calmed down. And although I will not get any better than I am now, in the main, I probably won’t have further inflammatory damage. Although some people have SP with ongoing relapses; to me this sounds like they are still kind of RR, but with less recovery between inflammatory attacks. I am hoping that I’m right about this anyway. If so then further disability will come not from inflammation, but through the lesions that are already there and muscle damage as a result of the damage to my CNS.

I don’t have a theory about the progressive nature of PPMS. I just don’t know enough about it.

There is of course the movement to stop using the labels. Or to replace the SP/PP with ‘Advanced’. Which would also mean you could still be in the RR phase but also be Advanced, because of the damage done which is now past repair. But if in fact there are two main types of MS, the RR/SP version and the PP type, then to call both Advanced is not really so useful.

My idea about ‘remission’ during the RR phase, is that there are periods of time during which there is no active inflammation. A relapse may ‘remit’, in that the inflammation dies down and the symptoms either completely or partially recover. But actual remission is where there is no activity. We perhaps confuse recovery of symptoms with remission.

Obviously as I said at the start, I am happy to be blown out of the water on some or all of my theories. I could be 100% wrong. Or just partly wrong.

What do you think?

Sue

I think Sue you’ve probably got it about right.

My most recent consultation came back as SPMS WITH RELAPSES, which I’ve only recently moved to.

This is how it was explained to me last week.

There is SPMS & SPMS WITH RELAPSES, the second a little less common but still part of the MS “family”.

I always that SPMS would mean no more relapses but the neuro said it’s still possible.

I was also told that remission does NOT clear away lesions, it only means they are not as inflamed, the scaring is still there, as is the damage already caused, no matter what level of MS one has. Old lesions can flare up, cause issues, but it may not necessary be a relapse with new lesions, just old lesions plying up.

For me the grey area with SPMS or SPMS WITH RELAPSES is which is the worse of the two evils ?

You could say that straight forward SPMS without relapsing is better because without the relapsing theres less chance of developing new lesions, and therefor perhaps less chance of more disability after a relapse.

However, on the other hand, SPMS without relapsing could be classed as a slow decline anyway ?

Another thing to consider is, even at the RR stage it might only take one nasty relapse, even years apart, to put someone in a worst condition than someone with SPMS or even PPMS, and possibly not fully recover from it to the level they were before the relapse !

So one could possibly argue that moving onto SPMS or even SPMS WITH RELAPSES is perhaps better because at the RR stage the disease is possibly more potent in regards to having MORE relapses than either SPMS and even SPMS WITH RELAPSES, and it’s here that most damage could possibly occur after relapsing and causing lesions ?

I do think you have a point about most damage being caused PERHAPS during the RR stage, because this is where the lesions are caused, hence DMD’s only offered at this stage to try and hold back a relapse.

Its such an odd illness to pin point anything directly to or to map out.

I think I mentioned in a previous thread that I saw a councillor at my works who was brought in to see how I was doing who also had MS, she had PPMS, which I ALWAYS thought was the worst type, but honestly this lady would run rings around me as far as mobility goes, she walks her dog for 2 hours everyday, drives, does not use any walking aids, but yet she is PPMS due to other symptoms of her MS.

This illness act so differently on each person, no matter what level of MS you have, and that in itself can be so confusing when trying to self diagnose or get your head around your particular level of MS.

I suspect that the question of ‘which is worse?’ is futile.

For me, SP without relapses is better than RR (I hope), because I’ve not been able to take a DMD for more than 10 years due to side effects. So the humdinger of a relapse 6 years ago hit me so badly that I’ve not been able to walk since then. While in the last couple of years that I’ve moved into the SP camp disability progression has slowed down. I’ve not really changed at all.

But as for PPMS, the disease is so random, that for every person who is not too badly affected, or has very gradual progression, there’s another who is dreadfully disabled by it. And while there are some people whose PPMS has a very gradual disability pattern, there are others who are hit very hard and very fast.

So I think I’m sticking to the idea that RR/SP is a completely different pattern to PPMS. Even maybe a different disease, albeit one that shares a lot of symptoms.

And as always, let’s agree that MS is such a peculiar bugger that it’ll do what it wants, when it wants, regardless of the label you give it.

Sue

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My thoughts are very similar to yours in regards to RR being potentially a bit more of a “ticking bomb”. I always think of it this way though. I think because on paper RR is the start, we tend to get into the mind set that anything else is worse, so therefor staying RR is better, but as we now know theres more chances of relapses in the RR stage which in turn could cause more lesions and ultimately could be left with more severe disability . Like you say, MS will do what it wants & when it wants !!

Remember getting this response on the forum when I asked something similar, from Rizzo - a wise woman who had a lot to contribute to this forum who has since retired from the task but fondly remembered: Unfortunately, it’s not that simple. Certain symptoms can only be caused by lesions in particular places, but many can’t be narrowed down so easily. For example, nystagmus is associated with a lesion in the cerebellum, but poor balance might be caused by a spinal lesion, damage to the cerebellum or to one of several different places in the cerebrum. One of the reasons that it’s not straightforward is that most actions and behaviours rely on multiple areas of the nervous system working together. Damage to any one of those, or to any bit of any pathway between them, can affect the action/behaviour.

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Yes Rizzo knew her stuff. And is still educating us. I know it’s not that simple. But for people like me, who want to know but have no scientific knowledge, it’s the best we can do to try and understand our bodies. Sue

Interesting the q re lesion position v symptoms. I may be wrong but I don’t think a nearlologist will talk to you about it. Why… Why with all medical trials do they have a ‘control’ group. Given a percebo. Understanding that if I know the bits of me ‘affected’ by lisions may affect my drive to make everything ‘work’. A big big part of me wants a copy of my mri so I can ‘research’ , but I recognise it’s a bad plan. If I reach a point I have to give up my job that will change. But for now I am holding on to ‘blind faith’ that positive thought & behaver will, ( with my DMD) lead to a long time of being ok.

I’ve mentioned here here a few times that MS seems run in my family, because of this I personally think that as a whole theres a link between MS and family genetics or being hereditary ect .

I have it, my sister has it, and so does my first cousin, and a few months ago my other first cousin, the sister of the cousin with MS, started showing some worrying symptoms that are now being investigated by a neuro.

Anyway, if I look at the 3 of us who do all MS and try to break down our symptoms and level of disease, 2 of us are almost identical in symptoms and lesion areas, which are all in the spine and totally clear brains, the other is the total opposite, clear spinal results yet lots a small lesions in the brain, and different symptoms.

Myself & sister who have the lesions in the spine (clear brains), both suffer mostly from mobility issues, mainly on the left hand side, altered sensations in both hands, very stiff and weak leg lift, robotic like walking, fatigue.

Now my cousin, who like I say has clear spinal results, but a lot of lesions in the brain, has very very little mobility issues such as leg stiffness or weakness/balance ect, in fact I would say nothing noticeable at all.

However, she sufferers immense pain throughout her arms and face, loss of feeling in skin touch, her vision can almost go completely for days sometimes weeks, her hands go almost solid, dizzy/vertigo symptoms and she has longer times where she’s hit by knockout fatigue, sometimes having no choice but to spend a week in bed.

She has had countless relapses over the years and is now on DMD’s.

I might be wrong, but comparing all 3 of us it’s seems as though mobility is compromised more if your lesions are in the spinal area, but theres more overall symptoms if in the brain, and relapses seem more frequent.

Like I say I’m only using my own symptoms and comparing them to my sister and cousin.

We often sit down a chat about the MS and how it affects us, and every time my sister and I are almost identical in symptoms and can tick the box’s as we go along, yet my cousin can be on a totally different page.

When there are 3 MS’ers in the family with a possibility of a 4th, the topic of MS is never far away.

I guess though if it was as simple as just comparing notes it wouldn’t be as difficult to find a bloody cure !

This is my understanding based on personal experience and a fair amount of reading.

The area of the brain where lesions appear would allow a neurologist (not a radiologist) to say what a patient’s symptoms would be. Lesions don’t disappear. They can be regarded as scars left by the action of the disease. It is possible to completely recover from a relapse. It depends on the severity of the relapse and whether the brain is able to find alternative pathways for the signals. SPMS requires a preceding period of RRMS, that’s what makes it secondary progressive. RRMS may not have been diagnosed if the symptoms were mild.

I find it helps to think of the different types of MS as graphs. Each graph starts with a flat line representing the level of ability before MS. Benign MS has a dip or trough for the first symptoms, then another flat line. This line will often be below the level of the first one because of residual damage. RRMS has a series of troughs representing relapses. The lines linking the troughs may be at the same level as the first one, or lower, depending on residual damage. SPMS is the RRMS graph followed by a series of dips as disability progresses. PPMS is a downward line, the steepness depending on the severity of the condition.