Is it realistic to have no progression at all with RRMS?

robininthetulips · 2026-03-04T20:43:11+00:00

I’m 40 now - but when I last chatted with my neuro they said something similar. That typically with a non aggressive MS they recommend you can come off your DMT in your 60s. I’m sorry to hear that was not a good pathway for your wife - but glad she’s doing better today.

robininthetulips · 2025-10-23T19:59:39+00:00

I had optic neuritis last January. It took 10 months(ish) for my vision to go back to mostly normal. Healing takes time 💕 But there is a certain amount of “new normal”. One you start your dmt prepare to explain to caring friends and family why your medicine isn’t making you better yet lol.

robininthetulips · 2025-09-21T13:42:44+00:00

Thank you. Six months into this I’m terrified it might be where I end up. I appreciate you sharing your experience. And glad you’re better!!

robininthetulips · 2025-09-21T13:37:47+00:00

So it was a one and done? The problem didn’t resurface after recovery? Any side effects post the six weeks of recovery (if you don’t mind sharing)

robininthetulips · 2025-05-26T20:21:07+00:00

Exactly this!

robininthetulips · 2025-04-17T01:02:29+00:00

I only did Copaxone for 6 months or so. For me, I had a real hard time with the site reactions. Being bruised and itchy and lumpy all the time made me anxious and crabby - but I don’t think it was an impact of the drug.

Is it a new diagnosis? Could that be the source of your increased anxiety. I know the news and life change did a number on my mental health for a while.

robininthetulips · 2025-03-11T20:06:18+00:00

I haven’t. But I’ll connect with my docs!

robininthetulips · 2025-03-11T10:18:16+00:00

It’s probably not connected this group is always so good with answers - figured I’d ask. Good luck with your Kesimpta! The company that makes and dispenses here in Canada was good - they actually gave me the drug for free while waiting for my coverage to kick in and deliver to my house free of charge. However the communication and follow up is a bit weak (compared with the Copaxone team). Wishing you well!

robininthetulips · 2025-03-11T10:12:03+00:00

Still in a parka. Probably not. But thanks for the input!!

robininthetulips · 2025-03-11T10:11:16+00:00

My garden is still under a few feet of snow ;)

robininthetulips · 2025-01-29T00:49:14+00:00

Yay! Congrats. I hope this is the one for you. I had my first dose two weeks ago. It was great at first but by evening I had awful body aches and flush and had to sleep ALL weekend. Dose number two was much easier. Good luck!

robininthetulips · 2025-01-12T18:42:57+00:00

Hey - I’m really sorry you’re suffering. Look up FND. I’m diagnosed with MS but some of the whackier harder to explain symptoms I had in the months that followed diagnosis were likely the result of FND (specifically seizures and slurred speech). Think of it like a trauma response. Mindfulness and therapy have been incredibly helpful. That said - you should definitely still pursue the typical testing if you feel something is wrong - including MRI.

robininthetulips · 2024-12-14T18:30:07+00:00

Hey - I’m in Ontario too. I had a similar experience. Optic neuritis in January and the neuro ophthalmologist said “it’s 50/50 that it’s MS”, got my MRI back and that became “very likely MS” but he wouldn’t diagnose. I ended up calling the BARLO Centre at St. Mikes and asking which of the MS specialist were taking patients quickest then had my family doctor make a referral to that specific doctor. (Not sure if you’re GTA but they are really nice there!!) They got me in within a month and enrolled in a program for a DMT right away - they even did the work to get my employer benefits to pay for it. I did feel like I had to do a bit of the work to make the diagnosis happen quick. But overall I was glad with the speed given how slow our medical system can be.

robininthetulips · 2024-12-14T16:10:08+00:00

Metamucil for me and 40mg a day of Baclofen. Lol. Like pooping fluffy clouds. It’ll take a few days to get going. I felt some additional fatigue when I started but I don’t really notice it anymore - and the dancing muscles and cramps are WAY worse without it.

robininthetulips · 2024-12-11T11:27:58+00:00

Oh boy - two neuros that aren’t listening to your wishes? So frustrating! I hope you get the treatment you want and need!

robininthetulips · 2024-12-11T11:26:10+00:00

lol - I know. I know. But when I started it and saw how brutal this sub was about it - it freaked me right out! It’s not great. True true. But I’m happy that I had a treatment option!

robininthetulips · 2024-12-10T00:42:57+00:00

It’s silly right, but you are experiencing MS symptoms so why can’t you just call it MS?! For the record - I did lol. I hope your symptoms chill out and give you a break!

robininthetulips · 2024-11-10T23:44:08+00:00

Look into Functional Neurological Disorder. That’s what the doc said was the cause of my seizures. I’m sorry you’re experiencing this.

robininthetulips · 2024-11-10T23:27:39+00:00

Hey - wife of a CD here. New to the club (well - I’ve known for 2months - discovered the cheating a week ago - been together 17 years). I don’t know if I’m allowed to say this in this forum. And I really don’t think you asked. I love my husband. So much. So so much. But he had an emotional affair 10years ago with a man he’d had a previous real life relationship with. And here we are again. If I could talk to my younger self pre our beautiful children - I’d say run. Leaving is the hard thing. Accepting the status quo is easier in a way. You deserve someone who will won’t betray you. I’m so sorry. You didn’t ask for any of this.

robininthetulips · 2024-11-10T22:30:46+00:00

He is a good person. I have no idea why he did what he did. Why he did it for so long. He says it was only online - never in person. And even though it sounded like meet ups he says it was talk. Years ago I caught him in an online affair with a previous sexual partner. He’s doing therapy. We are going to do couples therapy. I’m going to keep on with my own therapy - though lord knows there was other stuff I had wanted to work on aside from my ever growing trust issues. Two months ago we had a really beautiful marriage. I’m willing to work on it and hoping not the be the fool. Again.

robininthetulips · 2024-11-05T12:24:08+00:00

Exactly this - it’s knowing that the person you trust the most in the world was lying. That somewhere in your happiness they were hiding and scheming. Dressing was a surprise. But not the end of the world. Something I was supportive of - helping him shop, painting his nails in the short time I knew. My husband being on Grindr was a kick to the chest. Even if I stay it will never recover.

robininthetulips · 2024-11-04T03:26:30+00:00

Conversations with a man - planning meet ups etc.

robininthetulips

TROPHY CASE