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Am I out of date?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.
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?
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.
Hi, as the others have said…PPMS stays as PPMS…I’ve had it 24 years!
RRMS can turn to SPMS.
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
Hello my twin, in thoughts only, good to meet you!
Hi, I have had PPMS for over 20 years and know nothing about these other “short dials”; I’ll stick with what I know even though after 20 years that is very little, but perhaps, personally, more than my neurologist!
Hi, dont know about your area, but MS nurses are like gold dust here.
Changing to a different isnt possible.
No point, but I have asked to see my neurologist to discus this, who I’ve just heard from, and he’s to busy to see me!
Hi treetrunks, pleased to meet you
Hi PBMS, I don’t know about this area, but I’ve now had enough of not so good nurses, I’m on my 4th now, and none have been very good.
I had one that did her upmost to put me on morphine, which I refused, but she kept banging on about it even though my neurologist said it would be a waste of time me taking it.
The same nurse gave me a right proper telling off for using cannabis, yet she was happy to push opiates on me!
What on earth are they trying to give you morphine for!
Complain, complain, complain this is so wrong. What are they hoping to achieve by that, make you so doped up you don’t bother them anymore?
I have never had anyone in the medical profession tell me not to take CBD, I’ve even had someone suggest it.
Rant over, you need to speak to neurologist, don’t take no for an answer explain the situation and state you will make a formal complaint if your situation is not addressed.
Only a suggestion, good luck.
Hi Cortez, I was diagnosed with PPMS 22 years ago. I had a regular neurologist in the early days but that eventually turned into an MS nurse twice a year; little more that a conversation every six months mainly revolving around how I felt. ( box ticking) This continued for a few years and then dropped out.I was not on any MS medication other than peripherals i.e.peeing, erectile dysfunction and drop foot. This continued till 2015 when I moved to Scotland and acquired an MS nurse whom I meet every six months/year; she generally has been very helpful.
In December 2021, major change, drop foot less manageable, ankle not supporting weight on right,drop foot, leg.Took up with neurologist who arranged MRI’s. I am not expecting any major help, so wondered if there are any others in similar situation, and where did they go from here?