Forum

What on earth is “probable ms” and how to deal with it?

Just to pre-warn I’m completely tipsy had two lovely glasses of wine, that’s all it takes these days. Was told by my neurologist that I have probable ms a couple of days ago. He won’t officially diagnose until one more relapse…yippee!!! He thinks it’s probably PPMS so no real DMDs to choose from, but he still thinks I’m having relapses?!!. No significant changes on the MRI, hence his thoughts. I’ve been waddling like a pregnant woman and have constant pain in my feet. Feeling a little pi**ed and fed up!!! Rant over…

hi

that “probable ms” sounds a bit of a cop out to me.

he probably thinks it sounds like ms but maybe you are not fulfilling the macdonald criteria.

from now on see your gp with every new or worsening symptom to get it on your medical records.

the painful feet are horrid. i have them too.

i’m constantly astounded at how much i took my central nervous system for granted before it got damaged.

don’t allow this sh** to keep you down.

give yourself a treat soon.

What on earth is your neurologist on about?

Probably PPMS but is waiting for you to have a relapse? Does he even know the difference between the (stupid I know, but all we have right now) different types of MS?

You either have relapses, in which case essentially he’s more or less calling it CIS, and if you have another (!) relapse then it’s RRMS in which case you’d qualify for DMD, or its PPMS in which case you might get worse, but won’t have remission, and calling it a relapse is ridiculous.

In your position, I’d be tempted to write a letter spelling out the utter dichotomy of what he’s saying. Then again I’m an inveterate letter writer.

It’s certainly no wonder you’re ranting.

Sue

[quote=“Ssssue”]

What on earth is your neurologist on about?

Probably PPMS but is waiting for you to have a relapse? Does he even know the difference between the (stupid I know, but all we have right now) different types of MS?

You either have relapses, in which case essentially he’s more or less calling it CIS, and if you have another (!) relapse then it’s RRMS in which case you’d qualify for DMD, or its PPMS in which case you might get worse, but won’t have remission, and calling it a relapse is ridiculous.

In your position, I’d be tempted to write a letter spelling out the utter dichotomy of what he’s saying. Then again I’m an inveterate letter writer.

It’s certainly no wonder you’re ranting.

Sue

[/quote] what about PRMS

what is PRMS, i have never heard of it.

Carol it’s primarily relapsing ms. Where you have constant deterioration with relapses as well. I think it is quite a rare form.I never knew there were four types of ms before I was diagnosed with ms either.

To the original poster, sounds like he thinks some things point to ms but you don’t meet the criteria in some way. You said you have already had at least two mri’s, did he say he would do another one again?did you have contrast. I assume you have had the usual battery of blood tests to rule out other conditions? As Carol says make sure you keep a record of your symptoms and let your GP know and neuro if you haven’t been discharged. It’s horrible been in limbo, but then again even if things are pointing to ms it’s still a shock to be actually diagnosed. best wishes.

Yes, occasionally people are progressive but also have relapses. But the OP said the neurologist thought it was Primary Progressive, not Primary Relapsing. And yet wanted to wait for a relapse!

Initially it’s really fairly unusual to be given the PP diagnosis straight off, most neurologists would in fact wait for either a relapse (and call it RRMS which then gives the opportunity for disease modifying drugs) or progression without remission. In which case, there is no route to DMDs, and they would be of no help anyway (unless Ocrevus gets NICE approval that is). Neurologists would probably prefer to diagnose RR rather than PR anyway, because PRMS would not entitle the person to DMDs. And yet, it would seem to me that a DMD would be of use; if a person is relapsing, then they would have the type of inflammatory activity that a DMD is designed to reduce.

So, of course there is another type of progressive MS, but it’s one that is very rarely diagnosed. And as an initial diagnosis would be worse than the ‘wait and see’ approach. In my opinion.

Sue

Thanks for the replies, I didn’t really expect any, I was really just venting. Hence, the anonymity. I’m slightly annoyed by the neurologist in the fact that I believe I do meet the McDonald criteria. I’ve had two confirmed attacks and have lesions in my spine and brain. The problem being that my last relapse/attack (2nd confirmed by the neurologist) did not result in any new visible MRI lesions. The consultant is erring on the side of caution and did say he could diagnose me now, but he wasn’t comfortable, so will wait “for the natural progression of the disease”. His words not mine!! I see him again next month with the view to start oral steroids if the relapse hasn’t subsided by then, It started in early March!!!

In terms of the PPMS diagnosis, I think, in my wine infused haze I put words in the neurologist’s mouth. He said it appeared to be progressive in the fact that I don’t seem to recover from the relapses. He did gloss over treatment options, but said at the time of diagnosis these may not be an option for me. So it’s very possible that I’m putting two and two together and making 10…

I feel I’m very much in same position as yourself. I too Believe I fit criteria but as no new lesions then Neuro does not see need for dmt as no new inflammation . This then leaves me thinking he believes I may have passed the rrms stage and heading for spms. The worry is in order for treatnent and diagnosis he is waiting on "major relapse as sensory obviously is not enough. Not sure I’m happy waiting but that’s where I’m at. I have many lesions and did ask if it was possible then that a relapse could reactivate existing lesions without forming new ones to which he said is possible, but that they would normally change shape or be bigger. I’m not convinced. I also dont believe he would continue arrange mris (number 6 coming soon) if he didn’t think I had ms so what stops them diagnosing ?

Anon. I’ve just been reading the new revised 2017 criteria for diagnosis and one of the major changes is that if dissemination in time cannot be proved but dissemination in space is there (which with lesions in different areas of CNS you have) then a positive lp result is enough to diagnose. It says ‘ POSITIVE FINDINGS OF O BANDS IN THE SPINAL FLUID CAN SUBSTITUTE FOR DEMONSTRATION OF DISSEMINATION OF LESIONS IN TIME’

have you had a lumbar puncture?

Thanks Cherry Tree. I haven’t had one, but I think I will insist on one at my next appointment. I don’t know how much the neurologist will listen, but I’ll give it a go. I’m not overly keen on waiting to see how things pan out. Has anyone else persuaded a neurologist to give them a lumbar puncture?

The silly thing is, it shouldn’t take much persuading. I saw a few general neurologists before seeing an ms specialist privately outside of my local area as I wanted someone whose life’s work was ms basically. The difference was crazy. I was not in there 5 minutes before he had said he will request mri of brain and spine with and without contrast, lumbar puncture, vep test, blood tests. You could be waiting years for another relapse and some lesions don’t produce symptoms so you’d be none the wiser. I would definitely ask for a lumbar puncture and if you are not happy with the explanation from neuro then ask your gp for a referral to a specialist who knows exactly what is what when it comes to diagnosis. I have learnt that neurologists are not made equally!

I should add that I did not have all those tests done privately. He wrote to my gp requesting she authorise a referral to him on the nhs and as she knew how unhappy I was with my local neuro she agreed no problems.

In your position, if your relapse started in March, and you see him again next month, I wouldn’t be happy taking steroids then. Basically, steroids work on reducing the inflammation and subsequent immune response that has caused the relapse. Steroids can work well when taken in the early days, but are less effective the more time has passed since the relapse started.

It does sound like your neurologist is essentially saying, you have MS, either relapsing remitting or secondary progressive. As to which it is, because he’s saying you are currently in the throes of a relapse, for which he is prepared to give you steroids, it seems plain to me that this is RR, not SP.

I don’t to be honest see the point in an LP to confirm what the neuro already believes. The LP can’t actually add to the diagnosis, whether it’s positive or negative.

But I’d probably be heading into the next appointment with some details about exactly when you’ve had relapses, the McDonald criteria: https://www.mstrust.org.uk/a-z/mcdonald-criteria and the NICE guidance for prescribing of DMDs https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/disease-modifying-drugs . And ask for DMDs.

Sue