In Aug I had a new MRI done, due to some tests and talking with my ms specialist, she was quite sure I was no longer rrms but moved on to spms. This shocked me, but at my dr on Monday she was able to tell me my MRI showed significant changes to my lesions on my brain , plus I now have lesions on my neck and spine.
Please can someone explain what this means for me, I know my eyesights not as good, walking has gotten worse with lots if falls and my pain is through the roof.
but what gets me is my ms specialist nurse has given me an app end of Feb 2017.
can anyone help
Janice
hi janice
it’s a strange beast this ms.
just when you are showing signs of relapses your specialist is telling you that you are no longer RRMS.
the only good thing about rrms is that you are eligible for DMDs.
i have read on here that there is a DMD for SPMS so ask about this.
the waiting time for appointments is ridiculous but there isn’t much we can do about it.
sometimes the best we can hope for is symptom management.
make sure that you get help with managing the pain.
times like these we could do with the cannabis that doesn’t get you high.
i’m looking into padded floors due to me falling a lot.
they don’t sell them anywhere so maybe i need a bouncy castle!
hope you get some relief
carole x
Janice. Did your ms specialist (Neurologist?) not give you a little time and discuss this new diagnosis with you? Had you been on any DMD?
In my untrained opinion, and it is just that, my opinion, I think it shows that the progression on your scans shows that your ms has been quite aggressive. Ask your GP or ms nurse to refer you to Physio who can help organise crutches and/or a rollator to help with your mobility. That really is essential to help you avoid falls, which apart from wrecking your confidence, will inevitably cause you to get hurt. Your GP can prescribe something that will ease naturopathic pain. Off the shelf pain killers won’t help this. I’m assuming you mean your February appointment is to see the Nurse and not the Neuro? Ufortunately most health services are struggling and are over worked and under resourced and that’s how it is. Why not email the ms nurse? I find I get a sure response this way, rather than a voice mail or forgoton phone call.
I can imagine how shocked and frightened you mus be feeling now. My diagnosis of rrms last year, has now been changed to ppms this year. It felt like having a new diagnosis all over again and there were plenty of tears. Keep on at the ms team and ask, demand, the help/information you need. Best of luck.