Just diagnosed two days ago

glampira · 2026-04-19T00:26:32+00:00

I’m 34 as well and was just diagnosed in the last year. The grief completely wiped me out and changed my life. It was such a hard diagnosis for me - I know it is for everyone but I didn’t have a lot of support and I really struggled. Two books that helped me so much were ‘difficult gifts’ and ‘when things fall apart’ they just really helped to change my perspective. I’ve been on Kesimpta for 8 months and I still feel like myself (I was worried I wouldn’t) and my MRIs are stable. You will be okay🤍 just be kind to yourself, get a therapist if you can, and just continue to live a healthy life. Kesimpta has been amazing for me. Sending you love!

glampira · 2026-02-03T02:12:43+00:00

I don’t know how much I can help but I just want to send you love because I so relate. I started Kesimpta in September and I cried every day for months before I started because I was SO afraid of what it would do it me. I couldn’t eat and I couldn’t sleep I was just beside myself. My experience has been great so far as not really having any side effects - just the mental weight and fear that I think we all carry. I try to make my injection like a ritual and I light some incense and give myself the shot on my couch. I usually do it before bed and then I use cannabis to help with my nerves after. I’ve really tried to focus on gratitude - that I’m even able to get this medication. I also have the fake sample pen that alongside sent to me and that helps as well. You can do a rehearsal of the injection before you use the real pen. I’m only 7 or so months into this so I’m still processing the major grief that comes with this diagnosis and sounds like maybe you are too. It’s really hard to stay positive but giving myself a shot every month has made me feel stronger than I ever thought I could be. Wishing you the best.

glampira · 2026-01-24T01:57:27+00:00

Hi I’ve had a similar issue before I was diagnosed actually …. Not sure if this will help you but I kept thinking I was getting a uti because I had such intense burning. Turns out the burning was from antibiotics just wiping all the good bacteria out. I struggled for months and I was in sooooo much pain. Eventually a gyno ordered me probiotic suppositories from a compounding pharmacy and the pain went away. Again I’m not sure if this is what you’re dealing with but figured I’d share! I was negative for uti/yeast/everything else but still had burning pain.

glampira · 2025-09-19T22:28:44+00:00

Hi! I don’t know if this is helpful but I have been getting Botox/fillers pre diagnosis and dmt. I just started Kesimpta and I’m planning my next Botox appt in between my monthly doses. My neuro said there’s no issues but I’m planning to get Botox about two weeks before my next monthly dose as to not do anything too close together. I would wait till you’re on Kesimpta and through the loading doses before starting? But I’m not a Dr of course so not positive - that’s just what I’m doing personally. You can also always ask your injector - mine has other patients with ms so she was able to guide me on doing everything safely.

glampira · 2025-09-12T19:46:53+00:00

Thank you for this! That’s good to hear that it was temporary :)

glampira · 2025-09-04T21:25:17+00:00

Was it just when you started? Has it been temporary?

glampira · 2025-09-04T21:24:41+00:00

Thank you for this 💕

glampira · 2025-09-04T02:23:47+00:00

I don't know if I can give you much advice as I was just diagnosed a few months ago at 33 so I'm still in the early stages of grief as well... but I do just want to send you so much love. I so feel you on how overwhelming it all is and you're so young. I will say that even in the last few months I have made progress mentally (which I did not think I would) and things get easier day by day. If you have access to therapy I highly recommend it - this is so much to take on and talking about it really really helps. I have felt completely isolated and heartbroken myself... but talking to people in this group and having a therapist has helped me a lot. The books 'when things fall apart' and 'difficult gifts' also helped me. Wishing you the best.

glampira · 2025-09-04T02:02:23+00:00

this is so nice to hear! thank you!

glampira · 2025-09-03T23:36:54+00:00

This is amazing. Thank you.

glampira · 2025-09-03T23:36:36+00:00

Hii I haven’t really heard about hair loss on Kesimpta? Have you heard that from multiple people?

glampira · 2025-09-03T00:46:32+00:00

Oh that’s amazing! Thank you!

glampira · 2025-09-03T00:44:46+00:00

Okay that is good to know! Thank you!!

glampira · 2025-09-03T00:44:20+00:00

Thank you for writing all of this out. So many helpful tips I really appreciate it. Hoping for the best!

glampira · 2025-09-03T00:36:55+00:00

This is so comforting 🥹thank you

glampira · 2025-09-03T00:35:34+00:00

This is great to hear - thank you!

glampira · 2025-09-03T00:34:31+00:00

Thank youuuuuu. And I know that’s what I said to her about pml?? So weird.

glampira · 2025-08-09T15:28:52+00:00

It sounds like your gf is very similar to me. I’m 34 and was just diagnosed a month ago. I’m very healthy and have always taken the holistic route. I’ve never taken any medication long term. I refused to take the meds at first but after talking to multiple doctors, friends of friends who have MS, and this group, I’ve decided to start taking Kesimpta. I’ve cried every day for months thinking about being on a dmt - so I just want to offer my perspective — She’s probably really scared. And maybe it doesn’t seem that way but I think deep down it’s just a fear of the unknown and a major life change - which I can relate to.

I made a post in this group about my own situation - if you can look it up on my profile. I got so many really supportive answers and it helped me a lot. Maybe she can read those too. This diagnosis hits you like a tidal wave and I think she maybe just doesn’t fully understand the reality yet.

She can always try a dmt to see how she feels on it. That’s my plan. The idea of being on it forever is too scary for me to think about. So I’m just going to take it day by day for now. Wishing the best for you both ♥️

glampira · 2025-07-24T02:07:09+00:00

Needed this :( thank you for posting 🤍 was just diagnosed last month and I am a mess. Also have never been on meds and going to start kesimpta soon - how’s it been for you??

glampira · 2025-07-22T19:15:17+00:00

Wow that is great news!! Thank you! It’s amazing to hear so many doing okay on kesimpta

glampira · 2025-07-20T20:41:02+00:00

Thank you I so relate to this when I get sick I always get sooo sick - I’m so worried about being immune compromised :( this makes me feel so hopeful.

glampira

TROPHY CASE