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RRMS to PPMS -ANYONE ELSE?

Hi everyone, Been away for some time, but thought I would come back to old friends. Hope you are all doing ok. I was diagnosed with RRMS a few years ago. Now the docs are wondering if that was the right diagnosis. Still MS but maybe it is PPMS. Has this happened to anyone else? If so could you please give me an idea of your history and why they changed their minds please ? Not worried, still got MS!! Just would like to hear other peoples stories. Thanks in advance. Enjoy your day everyone.

Hi Anne, I was dx PPMS from the start, so can’t really give experience of them changing their minds.

As I’m sure you know, RRMS cannot become PPMS… although it can become secondary progressive (SPMS). So it sounds as if yours was indeed a wrong dx.

Mine started pretty typically with symptoms that fluctuated on a daily basis but didn’t go away… and have got progressively worse although mine is progressing slowly thank goodness. It’s different for everyone but ‘slow progression’ is common in ppms.

I assume the change of dx is because you have not had relapses and remissions, but general progression?

Anyway, as you will see from this board, it really is so different for everyone and glad to see you’re not worried.

Just remembered, they did for a short while think that mine might be secondary progressive and therefore I’d had RRMS in very mild form… but they did another MRI and dx went back firmly to PPMS. That MRI was meant to be ‘with enhancement’ (if that’s what it’s called… when they inject you with something) but they changed their minds while I was in scanner. Of course nobody EVER explains anything so I’ve no idea what it was all about!

As you say, it’s all MS. Best not to get too hung up on the labels.

Hope you’re having good weekend,

Pat x

Pat,

Thanks ever so much for taking the trouble of replying to me. Your story makes interesting reading. Have a good weekend. I will let you know what happens in the end.

Anne

Hi Anne,

As I understand it, PPMS is devilishly difficult to diagnose. It relies on the patient having a good recall of their symptoms and how they have been over a number of preceeding years.

I was intitially diagnosed with just MS, no sub type. This was later refined to Progressive, again no indication of Primary or Secondary as that would require going back through my past medical history.

My wife seems to think it is probably SPMS, mainly because of what she read about PPMS and didn’t like the sound of it at all and I must admit, it can sound scary on paper. I tend to go for PPMS because unless the RR phase was so insignificant I didn’t really notice it, then I feel I have been on a long, slow decent for the last 10 years or so. I can see why the diagnosis is so difficult.

From what I have seen of my scans, they would seem to indictate PPMS, based on what I have read, the little bighters are lower brain and spinal cord and quite few in number.

It is all so difficult. I tend to go for just the two options, either Progressive or Replapsing Remitting.

It is not really a case of you being wrongly diagnosed, it is just that it has now being refined based on your recent history. And as you say, it is still MS. Of course if you are PPMS, then that does rule out a lot of the available treatments which seem to be for RR and target the severity of the relapses.

Regards,

Paul

My dx of PPMS was not difficult to make as I progressed from the start of my symptoms over a period of time. Teresa xx