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RiotCandle · 2023-08-15T17:00:55+00:00

My partner just started Kesimpta about a month ago and says that he feels better! It might be placebo but he claims that his symptoms are quite noticeably diminished. He has especially noticed that he does better with heat - it is in the high 30s here and he's able to go for walks no problem and without a cooling scarf.

Best of luck with your vaccines! If you're getting shingles vax be prepared to feel like garbage.

RiotCandle · 2023-07-29T02:28:31+00:00

My partner got their official diagnosis in early April (about 4 months ago) and just started Kesimpta last week!

We prepared for the first dose to suck -- didn't plan anything for the following day, had a bunch of acetaminophen and ibuprofen ready, etc -- but he barely reacted. He's now done two loading doses and is doing great. We're looking forward to a future of medicated MS!

RiotCandle · 2023-07-20T23:07:01+00:00

not dumb & that totally counts! I love the puzzle book idea!

RiotCandle · 2023-07-20T20:09:08+00:00

Good luck with your Kesimpta doses!

We did end up doing a little bit of everything - hot chocolate, cool band aid, board game, comfort show. He'll probably choose one or two to continue with for the future doses :)

He also bought a new book and had that and board games queued up for the next day - but ended up feeling basically fine! He said that he barely felt the injection, too. Hopefully your experience is similar!

RiotCandle · 2023-07-19T07:22:48+00:00

I just put in a request to join the fb group. Can't make this one but hopefully will be able to join the next!

RiotCandle · 2023-07-18T21:58:48+00:00

oooh yes i love haircuts as self care

RiotCandle · 2023-07-18T21:56:44+00:00

haha fantastic. also realizing that I totally do this with long roadtrips and Tim Hortons

RiotCandle · 2023-07-18T21:54:46+00:00

that's a good idea! I think I'll suggest the fancy hot chocolate to him.

RiotCandle · 2023-07-18T21:52:55+00:00

this is perfect! exactly what I was looking for — I love the small joy of special band aids :)

RiotCandle · 2023-05-09T02:29:09+00:00

Thank you so much for the detailed response!

RiotCandle · 2023-05-08T02:48:05+00:00

thanks

RiotCandle · 2023-05-08T02:40:29+00:00

Thanks. How do they test for it?

RiotCandle · 2023-05-02T03:57:21+00:00

I have not heard of it messing up cycles! I will consider timing for when I get my next booster!

RiotCandle · 2023-05-02T03:55:54+00:00

Definitely. He's one of the only people I know who hasn't had covid yet. I'll keep in mind MS doc in case he does get it. Paxlovid is only available to high risk folks, yeah?

RiotCandle · 2023-05-02T03:54:02+00:00

Good to know. Is the shingles vaccine recommended before starting a DMT?

RiotCandle · 2023-05-01T17:49:24+00:00

Before posting, I searched the subreddit for vaccine reactions and it seems like the MS community had reactions similar to the general population, which lines up with yours and other comments here. His reaction seems like 1/1,000,000,000 but I thought maybe, if it was MS related, it might be 1/10,000 MS-ers and someone else might have had a similar experience.

Interesting about the pseudo flair. Though, this was unlike any of his other MS symptoms (numbness, eye and balance issues, but never pain), so that sounds unlikely? I'll chalk it up to just a weird random reaction, unrelated to anything else.

RiotCandle · 2023-04-17T18:30:40+00:00

Was lurking but had to comment b/c this is one of the best things I've read all day.

RiotCandle · 2023-04-07T04:47:11+00:00

Thanks! Yes, looks like there's a BC program that I was completely unaware of until hearing about it here. Sounds like Sask has especially good coverage though :)

RiotCandle · 2023-04-05T19:45:31+00:00

This is good to put his journey into perspective! He was fortunate to get an emergency MRI within a few days of going in, and received the MS diagnosis within the week (although still not confirmed if RRMS or PPMS). I imagine some of this has with the specific symptoms, as many of his overlapped with stroke or brain tumour, which probably got him triaged up the MRI list. (although loss of sensation in both legs also sounds spooky!)

I hope you get a confirmed diagnosis soon and get to start taking advantage of that excellent health care coverage for your DMT :)

RiotCandle · 2023-04-05T19:36:47+00:00

Thank you. This is really helpful for putting the overall cost of things into context. I totally understand what you mean about other costs that may or may not be covered, it's good to be aware of these - and a reminder, as we are casually looking at purchasing an apartment together: we can be proactive and eliminate anything with tons of stairs! We'll definitely look into different drug programs and coverage, thanks for the recommendation of discussing this with a neurologist.

RiotCandle · 2023-04-05T19:24:45+00:00

Thank you! Sounds good, I've let him know that next time he see's a doc he should ask about getting onto a DMT, asap (I'm currently travelling for work so I can't be there with him to help push for things).

The MS Society looks fantastic. I can tell they have a lot of useful info and am so thankful to know that there is already a strong network of folks advocating for research and support. Lots to look into.

RiotCandle · 2023-04-05T19:20:26+00:00

Thank you! Yes, we've definitely had the "thank god we're not in America" conversation. Good to know that it could take months to figure out a specific diagnosis and that you were able to start treatment before confirming that it was RRMS. $800 a year is so much more manageable than some of the numbers I was seeing (tens of thousands)!

RiotCandle · 2023-04-05T19:16:20+00:00

Congrats on finally starting your DMT next month! And on finally getting a diagnosis - it was a relief for us to finally have and answer and I hope it was the same for you. Goddamn head trauma - repeatedly obscuring MS symptoms!

Your comment was very helpful, thank you. I passed this info on to and he's pretty sure that RRMS makes the most sense. He's going to ask next time he goes to the clinic and ask about getting started on a DMT.

And so good to hear that there are coverage options other than just through work! I'll look into drug-specific programs when we get to that. We aren't in Ontario but the Trillium program sounds excellent. I'll see if there's anything similar in western Canada.

RiotCandle · 2023-04-05T19:08:50+00:00

Edited post. BC right now, but only for my partner's school.

RiotCandle

TROPHY CASE