G'day RRms (relapsing-Remitting ms) newbies (newly diagnosed), YOU can do this life. It is not impossible. Take the strongest DMT (Disease Modifying Therapy) that YOU can handle (Ocrevus) and start adjusting yourself to this life.
It is possible, and YOU CAN DO THIS.
Royce
good advice.....loads of laughter and love and happiness are all good medicine to go along with your life and a good DMT...
I'm happy you've mentioned that! My husband has recognised that when I'm laughing really hard, I won't make a sound even though my shoulders are still moving, and then I "squeak" when I breathe in! He can just mention me laughing sometimes, and I'll immediately squeak 🤣 my carer has noticed my squeak as well, and she's mentioned to me the next time I get a proper laugh on, and start squeaking, she'll record it and send it to husband 🤣
Same here, my wife always laughs at me later.
Charlotte here, from the UK with the NHS, and I was diagnosed with rrms in 2015: the 1st dmt I was put on was copaxone. I was on that for 5 years, but I started getting worse. And so I was tried on tysabri, and I only had the 1 infusion of that, because the bloods that were drawn just before I got hooked up gave a positive result of JCV. So, I had to go back onto copaxone. However, I had a proper disease defining event in April 2021! I had 3 generalised seizures that got me ambulanced to hospital. I got hooked up to IV prednisolone, as well as started on another antiepileptic medication (on top of the one I had due to my 1st ms symptom - simple partial seizures) and I started to feel more like "me". I did get a call from my MS nurse, who told me to stop doing my copaxone on X date, because my neurologist had enough evidence to get me started on ocrevus! My MS is very aggressive, apparently! I had to titrate off prednisolone when I was discharged, 27 days after being admitted. I couldn't get the ocrevus the 1st attempt, because my wbc (white blood cells) were too low due to the prednisolone, but the next attempt I was able to!! As soon as the 1st starter was over, I felt amazing! I was able to walk again, and had enough energy in my legs to actually go and do weekly shopping with now-husband! That was magical, and I still wonder why I wasn't started on ocrevus sooner? Was it because I wanted to try and get pregnant with now-husband before anything else went tits up? Was it because, at that time, it was recommended that you come off ocrevus for 12 months until you can try, even though you can take copaxone throughout all your pregnancy? There's now been an update on the pregnancy front: you can start trying 12 weeks after the last dose, so essentially when you can also start to get vaccinated again!
That's wonderful news about the Ocrevus! So glad you are doing so well on it!
Congrats on the new Husband. It does seem like you have a run around on meds in the U.K. Glad after all you got it sorted.
Royce - please could you stop portraying Ocrevus as "the strongest DMT" - this is very misleading to the newbies you try to reach with your posts. While Ocrevus can be one of the most effective DMTs , it is not necessarily the best choice for all PwMS, and using the word "strongest" to describe it displays a lack of understanding that different meds have different modes of action, and that what works for one person is not guaranteed to be so effective for someone else. That's why different people take different meds.
Yes, there are some pretty ineffective meds still around - mostly the ancient CRAB drugs - and I have been a bit scathing here on this site about neuros who prescribe these as the first drug for newbies as that is recognised as not being anywhere near best practice in MS treatment these days. However, some people who have been on them for years are still doing surprisingly well on them. Constantly pushing Ocrevus at people and calling it "the strongest DMT" can undermine the choices people make in consultation with their neuros, and make them feel that they are not doing the best they can for their OWN version of MS - and such undermining is at odds with your frequent posts exhorting people to do the best they can in their own lives with MS as a permanent travelling companion.
Okay, it is technically the most effective medicine at the moment for Relapsing- Remitting ms (arms) and I do say I M NOT A DOCTOR SO CONSULT YOURS.
I think you are missing my point Royce - it is not "technically the most effective medicine at the moment" - it may be the most effective med for some PwMS but it is not the most effective med for all PwMS and that is why people take other meds - because the best med for them is the one which is most effective for them, and that may not be Ocrevus.
Okay understood but how does a newly diagnosed person make that decision with all the drugs available today?
Unfortunately many are given time to figure it out for themselves, and join forums to read about what others like, with little to no recommendations or education from their providers.
Everyone's MS is different. What works best for one may not be the best DMT for another.
Sometimes, just when one thinks they've found the best medicine for them, something changes and their treatment journey shifts to something else. Maybe they can't tolerate a side effect or a newer DMT has been released.
How does one decide?
•By researching this disease from reputable websites and organizations, like MSAA.
mymsaa.org/ms-information/n...
•By seeking out a well-informed MS Specialist, if possible.
nationalmssociety.org/Resou...
•By staying up to date on treatment options and talking with their neurologists.
Technically it is, and remember I state pretty clearly that I am not your Dr or anyones that I am a dr of any sort and to consult yours. Perhaps the term strongest should be modified I have been thinking about that.
Great response Frances_B I couldn't agree more
we all have our own choices but i agree with Royce that we should try for the newest drugs for if i would of had the choice way back when i was first diagnosed i would of tried it also ...back in 04 didn't have it for a choice ...i am so glad i am on it now and have been since 2017 ...had tried alot of the others and wasn't good deals...so we do have a choice he is just saying by what he has went thru just like so many have it is so much better of a drug ...thank you for your ideas just like his are his why are you going on and on about it...love and happiness is great medicine also along with laughter and lots of giggles...
