Need to rant , apologise


I have ms for over 20 yrs , still mobile and plodding along .

My Neuro in his wisdom decided I should change from Fingolimod to Kesimpta so I agreed . Kesimpta didn’t agree with me personally. Then we moved on to Ocrevus infusion , both these drugs knocked me for six and it took me 6 months to feel human again . I know both these drugs are well tolerated by most people and are doing good , just not for me .
So after a year of taking nothing the Neuro said my only other choice was to go back on Fingolimod , which I started last Thursday.

I am getting breathless and weak spells and at the moment feel like I am dammed if I take or don’t take a dmd.

My family are of no help and don’t really want to talk about it .

Rant over I am sure I wills sort it out in my head , bloody ms

Thank you if you read this

No need to apologise on here. I think a rant shared on here beneficial all round. You get to let off a little bit of steam to people who actually do get it.
And we are reassured that we are not the only ones who seem to the outside world to be managing (and who actually really doing a darned good job of keeping the show on the road, all things considered) have nevertheless sometimes have just Had It Up To Here with MS.

Thank you

1 Like

Hi @smurf5
I think if you feel you can manage okay without any DMD, go for it, it’s your choice.
I choose not to when I was initially dx, 20+ years ago, I did fine without for 9 years.
Then I started on Avonex, for another 9 years, then switched to Lemtrada.
After bad experience on it, I decided to go without again.
I went on Kesimpta last year, hoping it would relieve wretched constant backache, so far so good.
But now, I think the RRMS bounce after relapse is probably no more; if it’s now SPMS unfortunately, hey-ho deep down I probably knew its time would come, the last 24 years was a good run I suppose.
Wishing you all the best with your mobility and plodding along.

1 Like

Just to say what might sound like a misplaced thank you. First for sharing your ‘letting off steam and despair’. I’m totally sure we all feel like that from time to time and we all need to know that it’s okay to express and share our feelings. Thanks also for talking about your experiences with Kesimpta and Ocrevus- it’s very useful to know. I’ve been on Avonex for 17 years or so but my neurologist mentioned something about possibly changing.

I hope the Fingolimod settles down

1 Like