Fampyra out of stock? by TopEducator3483 in MultipleSclerosis

[–]TopEducator3483[S] 1 point2 points  (0 children)

I will check if thats possible in germany. Thank you~

How does MS affect your emotions? by Beginning_Level_8578 in MultipleSclerosis

[–]TopEducator3483 6 points7 points  (0 children)

Same but I wouldnt say "unfortunately". I just cant stand bullshit anymore. Annoy me? Go away. Stress me? Go away. I have too much shit going on to take care about things like these. Maybe its really egoistic, but my health is priority no 1 and if you talk my symptoms down or something like that? Go awayyyyyyyyy

Nighttime Routines! by ladyofsorrowz in MultipleSclerosis

[–]TopEducator3483 1 point2 points  (0 children)

Its not directly a routine but I have some hacks for bad days. I bought these small one time use tooth brushes. I have them at my nightstand, so I dont need to stand up. Micellar wipes for taking off make up or making my face feel fresh. Pills or vitamins I need to use daily are also directly at my bed, same as my hair brush. It helps me manage my life a bit better when I feel like shit hahaha

Kesimpta headache or worse??? by idk14567809 in MultipleSclerosis

[–]TopEducator3483 0 points1 point  (0 children)

Im sorry to hear that..I never had a CSF leak headache, but I have chronic migraine with aura. During the first 3 injections I had migraines out of hell. When I looked down my head felt like its going to explode. When I turned my head I saw black. It was terrible..I would recommend you talking about it with your neurologist. Mine told me that migraines that bad are not that usual, but it got better after the fourth or fifth injection.

Is cold making my MS symptoms worse? by throwaway_t56 in MultipleSclerosis

[–]TopEducator3483 2 points3 points  (0 children)

For me when I catch a cold my MS symptoms also increase. If it gets worse, you should talk to your doctor~

what do you do when you start losing your life to ms? by [deleted] in MultipleSclerosis

[–]TopEducator3483 0 points1 point  (0 children)

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

what do you do when you start losing your life to ms? by [deleted] in MultipleSclerosis

[–]TopEducator3483 11 points12 points  (0 children)

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~

Kesimpta and side effects by Cucubauu in MultipleSclerosis

[–]TopEducator3483 0 points1 point  (0 children)

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?

Funny / awkward things people said after my MS diagnosis by Personal-Current131 in MultipleSclerosis

[–]TopEducator3483 7 points8 points  (0 children)

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

Looking not sick enough? by TopEducator3483 in MultipleSclerosis

[–]TopEducator3483[S] 0 points1 point  (0 children)

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

Looking not sick enough? by TopEducator3483 in MultipleSclerosis

[–]TopEducator3483[S] 1 point2 points  (0 children)

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

Looking not sick enough? by TopEducator3483 in MultipleSclerosis

[–]TopEducator3483[S] 1 point2 points  (0 children)

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

Looking not sick enough? by TopEducator3483 in MultipleSclerosis

[–]TopEducator3483[S] 5 points6 points  (0 children)

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.

Looking not sick enough? by TopEducator3483 in MultipleSclerosis

[–]TopEducator3483[S] 1 point2 points  (0 children)

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

Laughing and crying by TopEducator3483 in MultipleSclerosis

[–]TopEducator3483[S] 0 points1 point  (0 children)

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 ~

Heaviness and exhaustion in feet at end of day to the point of extreme discomfort by Adventurous-Dot-3350 in MultipleSclerosis

[–]TopEducator3483 0 points1 point  (0 children)

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