Hi this is nicnac I used to be on the site back in 2007, after diagnosis in 2006. I now have two children and have stopped working. Have been taken off my dmd’s rebif since my last child was born. I had only ever had one MRI in 12 years and have booked in for one in February this year. My ms nurse thinks I should’ve had more as there is only my first one to go on, I had 7 lesions on the brain and 6 on the spine so am excited/scared to see how much it’s changed.
Any comments/advice welcomed.
Hi Nicnac, welcome back. I haven’t been on for a long time either and I was diagnosed in 2008. Yes, I definitely think you should have an MRI. You were on Rebif and if you ever need to change to a different DMD then an MRI may provide supporting evidence. Following the MRI you should receive an appointment with your neurologist. If not, then ask for one. I suggest you take someone with you to this appointment to help you remember everything and also take a list of questions. Others may suggest some questions. Choice of DMD is very much directed by symptom history and if you have stayed well on Rebif then why change, however I do think you should return to taking something. Good luck with MRI. Barty.
hi nicnac
i remember you but then my user name was pigpen (after my cat).
i was diagnosed in 2008 after an mri.
had an appointment with a different ms nurse who was appalled that i hadn’t had a more recent one.
so i have one at the end of january.
us old timers are tough old birds
let’s hope they don’t show any other nasties on the mri.
Hi nicac I was diagnosed in Feb 96 had 6 lesions on the brain and 3 on the spine. I was RRMS changed to SPMS in 2003, wheelchair bound now with bladder and bowl problems. Had an MRI in Sept 2018 and now there are 27 demyelinating Lesions in different parts of the White matter on the brain, there are also demyelinating Plaques at C1, C2, C3, C4, and C6 levels on the Cervical Spine. Sounds like my brain is a ticking time bomb. I hope your MRI has not changed keep our fingers crossed. Good luck kielynuk x
Thanks very much for your reply, hopefully based n the results of the MRI I will be given the option of returning to debit or going on to the new oral drugs for remember. After twelve years I am convinced I have moved into the progressive phase as my fogginess doesn’t seem to clear and my left foot drop can be sporadic. Numbness in my hands is constant and of pain especially spasms at night are daily.
What fun it is!!!
Hi
Welcome back.
I have no idea how many lesions I have. The other day my new neurologist was comparing new brain MRI with 2017s and saying, ‘that’s there’, ‘that’s new - oh no it’s not’, ‘that’s old’, ‘that’s there’, ‘oh now that one is new’! It sounded like there were loads and loads, but he said there weren’t so many!! No clue about the spine.
I think it’s more about where the blighters are than the number. And of course, the symptoms / disability they’ve left you with. For me, it’s lots of symptoms and disability.
Hopefully you’ll be able to start a new DMD.
Sue
could a neuro look at an MRI scan and describe exactly what disabilities a patient may or may not have without actually seeing the patient.
I don’t think so. If they could, then there’d be no need for physical examinations. Plus, the DWP would find some way of using it In a bad way. They’re the Devils Without Portfolio after all.
Sue