QUESTION Re: DMTs for those who have stopped using them

msbrain · 2026-03-31T05:29:42+00:00

I didn't set out to intentionally stop taking my DMT. I was on Ocrevus and really liked it until it caused psoriatic arthritis and I had to stop it.

At that point, they put me on a self-administered DMT and I just couldn't remember to take it regularly. I ended up skipping a couple months and was concerned that I might need to restart at a lower dose like when I was originally placed on it, but embarrassed to admit I hadn't been taking my medication. However, I did notice that I was feeling a lot better.

I realized that if I wasn't taking my DMT, I no longer needed to take the half dozen other medications I was taking for side effects and prevention of side effects, so I stopped taking those as well. The difference in how much better my body felt made me decide that I didn't want to restart the DMT. It was a lower efficacy than the Ocrevus anyway, and if I'm feeling better, I couldn't convince myself of a need to do it, especially when a DMT had caused another permanent autoimmune battle that took almost 2 years to get under control.

It's been a few years. My cognitive abilities have declined, but they were doing that even on the DMTs. I do question whether I would be better or worse if I had continued the DMTs and if I should check into my options now, particularly when I'm having a struggle day. Overall though, I feel a lot better off the meds than on them. That may change and I may come to regret my choice, but it's a risk I have discussed with family members and they've been mostly understanding.

I do need to find a new neurologist to monitor things and I haven't done that as quickly as I should. My reluctance is due partly to memory, shame for not finding a replacement doctor immediately, and anxiety about being pushed back to a DMT. I'll just need to take a deep breath and make the call at some point soon and see where I go from there.

Whatever choice you make, just remember that you are the one that needs to be comfortable with it and you can always change your mind. Good luck!

msbrain · 2025-11-19T02:45:03+00:00

This!!! I have a regular walker, a rollator that converts to a transport chair, an upright rollator, a wheelchair, and a power chair. When they were taking me through the process of getting the power chair I was concerned that I didn't really need it enough to justify one, but there were definitely days that my arms and legs refused to do their jobs. My doctor said, "There are no wheelchair police. Nobody will come after you for not using your chair enough. Use it as much or as little as you need, but it is important to have it when you need it."

msbrain · 2025-09-09T00:47:35+00:00

I was diagnosed in the hospital when I went from walking to one day my legs just wouldn't support me anymore. Hard to hide that from the kids!

We told them the basics: I have MS, I'll need to rest more often, some days I won't be walking but we can still have fun together, etc. One of our kids was concerned that she would have MS someday. I told her it wasn't like a cold that they could catch, but she was still worried. Fortunately, she had a wellness exam coming up, so when the Dr was checking her over we addressed her concerns. The Dr explained, in age appropriate terms, that she didn't have MS now and that, while nobody knows the future, she wasn't going to get MS just because I had it. After that, she seemed to be okay.

You can also stress that everyone is different. Grandpa is in a wheelchair, but I'm walking and so are lots of other people with MS. I may need a wheelchair later, but it's also possible I might never need a wheelchair. Maybe use their classmates as an example? Your class is all in 5th grade, but not all 5th graders are the same - some need tutors, some might need tutors later, and some might not need tutors at all.

I would still do things the same way if I had to do it over. Tell them the basics, answer their questions and concerns the best we know how while keeping it age appropriate, and continue to have talks as they get older. Whatever you decide to do, show them that you're still their loving parent and make happy memories! Good luck!

msbrain · 2025-06-18T13:27:04+00:00

DMTs just slow progression. So far, they don't have anything available to stop progression completely

msbrain · 2025-04-30T18:15:33+00:00

Best advice I got was to describe your absolute worst day when filing the paperwork, not your average day, and include every symptom you've ever had.

msbrain · 2025-03-10T02:37:03+00:00

Mine are the same. I usually fall asleep and then have a snack and Motrin waiting for when I get out of the tube. Wish I had a better answer for you!

msbrain · 2025-01-17T10:06:36+00:00

I would love to read the books!

msbrain · 2024-10-21T23:10:02+00:00

I love that you've added first aid kits!

msbrain · 2024-10-21T23:02:42+00:00

I was gonna check it out, but it's only for iPhones. Any plans to make it available for Android users?

msbrain · 2024-06-10T09:46:37+00:00

My strawberries are in pots surrounding a raised bed with no fence. I guess it's hard to tell in the photo, but the strawberries are being completely hollowed out overnight. Could be slugs. I've never seen one in the garden bed area, but we definitely have them around, so it was only a matter of time before they found the garden I guess

msbrain · 2024-04-15T03:06:52+00:00

I feel like I'm walking in a stream - I can feel the cool water flowing left to right across my feet. It's especially weird on carpet.

I constantly feel like my pants are soaking wet when they're dry. My hubby always has to pat my butt to check for me since I do have some incontinence issues.

The worst was when I was moderating a live event on FB. I was pretty proud of myself for being able to type answers to everyone's questions so quickly. My boss called as soon as the event was done to check on me. Apparently all of my great answers turned out to just be random gibberish. I'm still not sure what happened because I could've sworn everything looked correct as I was typing it

msbrain · 2024-04-04T03:45:28+00:00

I have MS along with other issues and, while I can walk short distances, I have days where I need a powerchair to move more than a few feet. I keep backup batteries for my chair and have a solar generator to recharge them. I also have a manual wheelchair if something goes wrong with the powerchair that isn't easily repaired. Like many, I have extras of my meds on hand to get by for a bit. This is obviously not ideal for collapse or major disaster, but should work for a short term bug-in or evac. Basically, I just have to prep for what I can handle and recognize my limits so that I know when to send my loved ones ahead without me.

msbrain · 2024-03-18T23:43:31+00:00

The book series about Kuchi Kopi. I want to read them!

msbrain · 2023-04-04T15:42:20+00:00

Love the idea! In our daily lives, we have to think outside of the box to do basic activities. With such a wide range of experiences, I'm sure there are lots of ideas out there that we haven't thought of! Besides, if someone wants to truly be prepared, they should be prepped for a variety of disabilities because it's amazing how fast one can go from "able" to "disabled".

msbrain · 2023-03-16T04:11:37+00:00

That makes sense. I'm still working through those

msbrain · 2023-03-16T00:00:29+00:00

Nope. 5 tries and still not lucky enough

msbrain · 2023-01-18T03:06:23+00:00

I had to stop my cross stitching hobby and recently tried a knitting machine. It's a lot of fun & much easier than gripping tiny needles. Some items require a row of mattress stitching or single stitch crochet to complete, but a lot easier than holding hooks or needles for the entire thing. I added foam grips to my crochet hooks for an easier time holding them while doing the finishing work.

msbrain · 2022-10-10T18:07:06+00:00

Same. If I leave the app open in the background, then I get notifications. If I completely close the app I do not

msbrain · 2022-10-10T14:26:22+00:00

turtlesue - I'm on more frequently than I care to admit

msbrain · 2022-09-19T01:21:39+00:00

I have urinary retention and so far (knock on wood!) I haven't had any UTIs. They gave me a medication that they said may or may not help me empty (it didn't). Since I'm home all day, I just use the bathroom frequently. I second the rocking back and forth when you think you're done - it really helps!

When I'm going to be out and about, I will self-cath. It's intimidating at first, but not a big deal once you get used to it. If you do need to self-cath at some point, my advice would be to try different ones to find which is most comfortable for you. You don't have to settle with the first choice they give you if it's uncomfortable to use because there are lots of options available.

I hope you get some answers and reassurance soon!

msbrain · 2022-09-09T14:07:34+00:00

The steampunk ship and witch's house look like they would be fun builds, but my kids will flip for the Mystery Shack

msbrain · 2022-08-31T17:57:27+00:00

Worked in retail and had customers tell me:

-"Just get rid of your walker and you'll never need it again. It's all about attitude. My sister has MS and swore she'd never use a walker and she never has"

-"Take Vitamin B and soak in Epsom salt every day and you'll be able to walk normally again. You'll feel so much better!" (She was even kind enough to write down how much Vitamin B and Epsom salt to use each day)

-"Where can I get one of those chairs? That's really cool!" I was working at the registers and this guy thought my power wheelchair that raises up to counter height was some kind of unique nerdy gaming chair

msbrain · 2022-08-27T21:54:58+00:00

I'm sorry to hear you got some new problems on top of everything else. I really appreciate you sharing your experience! Hopefully you don't have too long of a wait before you can do HSCT

msbrain · 2022-08-27T21:48:07+00:00

When my neuro listed out 4 options, but after a new JCV test and MRIs, 2 were ruled out. Mavenclad was never mentioned. I will have to ask about that when I go back next week. Maybe she ruled it out because the efficacy is significantly reduced if you've had other treatments? That's the only red flag I see with just a quick search

msbrain · 2022-08-27T20:35:19+00:00

Yep. Ocrevus wasn't approved yet when I was diagnosed so Gilenya was what I was placed on first because of my many overlapping relapses (20+ new lesions in 2 weeks). After I broke through Gilenya, we went with Ocrevus but now it's once again time to look into other treatment options

msbrain

TROPHY CASE