I still don’t understand at what point it is decided that MS has transitioned from RRMS to SPMS. I have had new and worsening of old symptoms over the last 2 years since my RRMS diagnosis but all MRIs have been stable!
This year I have developed excrutiating Trigeminal Neuralgia so MS nurse arranged me an MRI. Consultant phoned me and said that as there are no brainstem lesions, it can’t be MS related. After questioning me in more detail, he then said it doesn’t sound like typical TN so it is just ‘facial pain’ (Electric shocks/stabbing/drilling pain in jaw/teeth/cheekbone/roof of mouth) So what the heck I’m supposed to do about it I’ve no idea.
It’s all so confusing! How can things be getting worse (my left leg/foot/hip) - surely this cannot be remitting MS as it’s not remitting!!
Is anyone feeling clever enough to help me out here?
My MS Nurse along with myself decided a few years ago I am now SP, this decision was made because I haven’t relapsed for 10 years however I am slowly getting worse in my mobility, fatigue, cognition the list goes on. I have only had one MRI which was around 15 years ago when I was diagnosed although I’ve had symptoms for 28 years.
I haven’t had a consultant for years but had a consultation earlier this year and she ordered an MRI as she is going to put me forward for trial treatment. So I will see what has been going on and to what extent. She agreed with the assumption i am now SP.
the medics have foisted these m.s. categories on us - they are totally flawed - bits of us may be going steadily downhill whilst other bits of us recover.
Something called ‘smouldering’ m.s. has emerged - basically it seems the medics now think that the term rrms is inaccurate because the m.s. is always there - well I guess most of us could have told them that years ago.
What you have to do is discard these labels spms etc.
It’s no good saying the TN is ‘part of spms’ to sort of justify not sorting it out.
I agree these labels don’t really mean very much except perhaps PP.