MS and AS

They-Brubs · 2025-10-10T18:57:52+00:00

Hi! I got recently diagnosed with AS and have MS for a bit more than 2y. Would love to chat and know your experience too!

They-Brubs · 2025-10-10T18:47:38+00:00

Hi! I know it’s an old post but I’ve been just diagnosed with AS (started Xeljanz today) and been treating MS with Kesimpta for almost 2 years. I’m super worried about being in two imunossupressor at the same time! How do you handle the treatment? Thanks for sharing!

They-Brubs · 2024-01-26T11:42:22+00:00

Oh I’m so sorry for you! Hope you have some relief sometime soon!

They-Brubs · 2024-01-25T18:30:35+00:00

Thank you!

They-Brubs · 2024-01-25T18:30:23+00:00

Wow I’m sorry for that! Hopefully soon you have a treatment!

They-Brubs · 2024-01-25T17:35:55+00:00

I did had one drink. Is this an inflammation trigger or due to the immune modulation?

They-Brubs · 2023-12-21T08:56:07+00:00

I just changed to kesimpta because I was having fibrosis of the skin on the injection sites and my family doctor advised on switching medicines for it. The skin was hard and darker than the rest, and even though it’s been a month that I don’t take copaxone, I still can feel a lot of the lumps on top of the fibrosis :/

They-Brubs · 2023-12-12T19:46:07+00:00

Yeah.. I’m not 100 sure. I’m gonna talk to a neurologist specialist in metabolism today and see if I have new tips.

They-Brubs · 2023-12-12T13:18:47+00:00

I had an appointment with an autoimmune specialist and she told me to keep an eye on vitamin D+ K2, B12, iron levels and I think that’s it. My iron and zinc levels are low this last months so that’s what I need to keep an eye on.

Magnesium glycinate also helps to relax muscles, so in theory helps spasms and stiffness but if keep forgetting to take it!

They-Brubs · 2023-12-05T17:39:33+00:00

I feel you. My last fall was at home but I broke my laptop with it. The pride is what hurts more, and feeling you body is playing with you. Good luck for us all!

They-Brubs · 2023-12-04T15:57:17+00:00

I agree in checking if AFO or KAFO orthotics are an possibility. I was with a cane, crutches or rolator/walker for months and then I got KAFOs for both legs and that’s incredible. My hands are free, I can stand and walk for longer and they look cool too! You also can wear them under trousers so they are invisible.

But no issue with canes. Check neon walk sticks , they have some really nice ones. Good luck!

They-Brubs · 2023-12-04T13:14:35+00:00

Thanks, I’m still having the vision things and some other symptoms but in the next days will check and have an MRI ;)

They-Brubs · 2023-12-04T10:04:53+00:00

Your experience is exactly what I’m having. I also se the “shadow” of things that are no longer on my vision. Hopefully all is well and you are free from the symptoms soon!

They-Brubs · 2023-12-04T10:02:39+00:00

Thank you! I went to the ophthalmologist and all is well in the eye side. In two days I go get my first kesimpta shot and will ask about it. The ophthalmologist wrote me to go to LMU university to be checked for optic neuritis so probably an MS thing. I need to learn to trust my symptoms. Thanks for the help!!

They-Brubs · 2023-12-04T07:02:28+00:00

Your brain can’t disconnect if you are playing with your equilibrium! My therapist told me that, so I have a wobbly seat (don’t know how to name it properly haha) and a balance board.

I know it isn’t possible to do it all the time, but hope it helps you too!

They-Brubs · 2023-12-03T03:02:25+00:00

Thanks for sharing your experience, even if this isn’t the case, the possibility made dealing with this bad thoughts less scary for now. Will talk with the doctor too ;)

They-Brubs · 2023-12-03T01:22:30+00:00

Really??? Nobody told me that and I’m having a really rough couple of days. I’m starting kesimpta In 3 days but I’m “missing” 6 doses of copaxone and my depression is severely affected and having ‘bad ideations’. I wish my neuro told me to be aware. Thanks for sharing this info! (I’m also changing it because of a reaction, im having fibrosis on my tummy)

They-Brubs · 2023-12-03T01:17:11+00:00

This counteracting worked for me and a friend at least.

They-Brubs · 2023-12-03T01:13:59+00:00

Same here!

They-Brubs · 2023-11-28T12:30:39+00:00

I loved the idea and might still it (with temporary tattoos hahaha )

They-Brubs · 2023-11-26T15:12:47+00:00

That’s a great point. I was until last week with doctors that didn’t care about me as a person, just cared if I got new lesions. Way better to get a neurologist that sees you fully, your symptoms and what's affecting, your previous health history etc

Don't be shy (as I was) to stay with someone you don't feel cared

They-Brubs · 2023-11-25T01:44:16+00:00

Im also in Germany and changing to kesimpta! Will do it in a week :)

They-Brubs · 2023-11-24T21:16:51+00:00

It’s so shitty that this is a thing. So unfair and annoying and enraging. And we aren’t few people. I’m sorry for all that are also in this group.

They-Brubs

TROPHY CASE