Last reply 1 month ago
My history

Hi, I just signed up and just wanted to quickly introduce myself. I have MS for 20 years and am either secondary progressive or primary progressive. My neurologists couldn’t really agree… Over the years there has been quite a lot of activity. Currently, I’ve been in a wheelchair for the last five years. In May last year, I started with rituximab (the prior version of Ocrevus) and I just got a letter back from my neurologist that the control MRI after my second full injection in December was a very positive one and there have been no recent activities. Now, let the improvements start. I could think of a couple.

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grandma
1 month ago

Hi Henning nice to meet you. Don’t know where you are cos you didn’t fill in the bio bit. I’ve had the beast for 26 years, still here, still fighting, just changing from rrms to spms, but like you the neuros haven’t decided yet! Was on my feet for 23 years then things started to go down back fast 18 months ago, got changed from Avonex, which I had used for 23 years to Tecfidera a year ago. No relapses in the last year but still going downbank albeit more slowly. Lots of people on this site, huge range if ages, types of ms, experience, work experience so we’ve got lawyers, engineers, doctors, civil servants, teachers etc., so you can ask anything, somebody will know the answer and remember, with ms, there’s no such thing as a silly question.πŸ˜œπŸ‘‚πŸ˜


stumbler
1 month ago

Hi @henning_kielhorn and welcome.

I wish our Neuros were a bit more forward thinking when it comes to progressive MS. πŸ˜’


edmontonalberta
1 month ago

@grandma – Dublin, Ireland… πŸ˜‰

@henning_kielhorn – love your Alaska photo; Alaska is on my bucket list (of course it has to be the warm part of the year for me…

Out of curiosity, how can neurologists not decide which variation of MS? Knowing makes it so much easier to plan. Or am I missing something?


henning_kielhorn
1 month ago

@stumbler maybe something is changing. At least I was put on rituximab which is of course beneficial for people with progressive MS. I’m very excited about this new treatment and hope it will lead to some great things.
@grandma my understanding was that initially there were some relapses and a response to steroid treatment, which was seen as a sign initially of relapsing-remitting MS, but soon that changed and the progression became more relentless. Then everybody seemed to settle on primary progressive and forget about the earlier time.
The Alaska photo is in front of the Hubbard Glacier. That was fairly spectacular.
I’m in Dublin as well. Guess I still have to fill out those country specifics.


vixen
1 month ago

Hello @henning_kielhorn. It’s great that your team are proactive, makes a change from some of the experiences on here. Glad you found Shift!

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