New neurology nurse

Hi all,

I’m confused! I saw a new nurse today who told me that my PPMS could progress to Secondary Progressive MS!

I was diagnosed with PPMS 20 years ago and I’ve never heard this, and I was lead to believe that SPMS was a progression from RRMS.

Am I out of date? Have I missed something? Can anyone shine a light on this for me please?

After 20 years of MS, I don’t do as much reading as I used to do.

TIA :grinning:

Sounds as if your nurse is the one confused! Or that your hearing is not as good as it once was! Do those with Secondary Progressive MS progress onto Tertiary MS in time? :grinning:

Hello Cortez,

I’m quite sure you are right in your thinking, RRMS can progress to SPMS.

It sounds like your new nurse was maybe getting muddled, or as Ziola suggests, maybe you didn’t hear her correctly.

Keep smiling,

Ben

Hi, as the others have said…PPMS stays as PPMS…I’ve had it 24 years!

RRMS can turn to SPMS.

Boudsx

Thanks to all, and I’ve always been aware that PPMS isn’t connected too SPMS, and my hearing is a 100%, I just needed to make sure things hadn’t changed.

I even pointed out, when she said it, that SPMS isn’t connected to PPMS, and she went on to ask me when my last relapse was! to which I answered “I don’t get relapses because I have PPMS,” and she said I may be in remission!

It’s bad enough living with MS, now I have a specialist that has no idea about the condition. What on earth has the NHS become, and what do I do? She must be giving newly diagnosed people this kind of wrong advise, which is very concerning.

I had a Zoom meeting with this nurse a year ago during lock down, which was also strange, so shes had at least a year to spread this misinformation to other sufferers…

Have you tried to change your MS nurse? Also, complete a PALS complaint form about the MS nurses’ lack of knowledge. Good luck