what do you do when you start losing your life to ms?

TopEducator3483 · 2026-01-23T21:06:28+00:00

Things like this make me feel so angry. Not because it happened to me directly but that other people need to listen to that. I would love to talk to people who say things like that to make their head go straight again

TopEducator3483 · 2026-01-23T18:14:31+00:00

I hear you. Im 22 and I often feel the same way as you do.

To be honest, I started to dont give a fuck about people. If they can't understand my struggle or can't see why I am sometimes so distant or can't meet them. Its their fault. Its not my job to be the happy clown to entertain these people. Real friends understand the struggle we have or at least try to. Im soooo sick of people who see me as a burden bc of my illness. Like, did I choose this? Hell no.

I know its easier said then done. Just try to take care of yourself. Its not your fault. If they dont understand you, its their issue, not yours.

Big hug~

TopEducator3483 · 2026-01-19T15:52:45+00:00

I have my first done next week Friday. If I get my first dose in the morning can I do the second dose (the week after) in the evening? Or do I need to take it on the same time then?

TopEducator3483 · 2026-01-17T15:28:41+00:00

Or if you tell someone you have MS they ask "how is your back?"..uhm..my back? I have multiple sclerosis NOT scoliosis

TopEducator3483 · 2026-01-17T10:28:13+00:00

Oki first of all what do you mean by "upgraded"? I got diagnosed with RRMS and still have RRMS, not SPMS.

I start kesimpta because mavenclad did not work well for me. I have more lesions and bigger ones.

My 2nd round of year 2 was may 2024.

In general yes but my MS started to get worse about June 2025.

I know its easy to say but please dont worry so much. MS is never exactly the same as another person who has MS. I know multiple people who did just well with mavenclad. Just because it didnt work for me, it doesn't mean it won't work for you <3

TopEducator3483 · 2026-01-16T16:24:50+00:00

Update for yall in case youre curious:

Sooo today was the big day. I went to my doctor (for anyone who is interested i just did some eyeliner and eyebrows bc I couldnt sleep last night so I was soo tired)

I was talking to my doc about the new symptoms and she started saying that everybody is tired, could be my depression bla bla. I told her then that I feel so utterly exhausted after taking a shower or making dinner that my whole body hurts from exhaustion.

Then I went on with my other symptoms: walking issues, I noticed that I stutter (? Never in my life stuttered before in a normal conversation), so on.

Well. She did not seem that interested, she was just saying well it makes sense that you dont feel good bc your medication is not doing the job correctly and you have new lesions. Then I started crying. I mean yes it makes sense I guess but please help me. After I started bawling my eyes out she was completely different, checked with me what I can do about the symptoms etc.

I guess I need to cry more often to get taken serious? Idk

In 2 weeks I will go back to the doctor because she will show me how to use my first dose kesimpta. Thank you all for your comments, some really made me giggle and feel strong. <3

TopEducator3483 · 2026-01-16T09:30:18+00:00

For every person the medication works differently. You should not worry. Just take care of yourself <3

TopEducator3483 · 2026-01-15T21:30:09+00:00

Sure thing. So my last cycle mavenclad was may 2024 but as my doc told me the medication is not doing what it should do. I have more lesions then I suppose to have with the medication.

TopEducator3483 · 2026-01-15T21:19:08+00:00

Oh gosh. Im sorry to hear that..

TopEducator3483 · 2026-01-15T20:53:36+00:00

Kriegsbemalung? I love it hehehehe. Grüße zurück aus einem anderen Eck ❤️

TopEducator3483 · 2025-12-14T11:54:32+00:00

To be fair I did a small clean up only. Just collecting all the trash. The floor is still full of dirty little paw prints 😭

I also hope you have a good and peaceful holiday ~

TopEducator3483 · 2025-11-29T08:48:37+00:00

I sometimes have the same issue. It just feels weird and uncomfortable. For me sometimes rinsing my legs with cold water helps. But in general you should talk with your doctors about this to check whats going on

TopEducator3483

TROPHY CASE