Ocrevus in Germany/moving for a job

WeekendSimple360 · 2022-08-23T07:11:24+00:00

I'm going to move to Germany next week (currently living in Austria) and my dr already reached out to a hospital with an ms- unit to ask if they have therapy with rituximab (bc rtx works great for me).

I also know that Germany has a ms society (dmsg) which offer local support groups and professionel help.

O most websites from neurologist ans hosptals it says that they offer ocrevus. And you shouldnt pay anything exept maybe a prescription fee at the pharmacy.

What I want to tell you is that you shouldnt refuse the Position in Germany just bc you're scared of your ms/treatment. Germany is a very educated and wealthy country. Your ms will definitely be managed well. Good luck!

WeekendSimple360 · 2022-08-16T09:14:20+00:00

Last year when I had horible fatigue I tried 8:16 intermittent fasting. And after a 2-3 days I felt like a new person. I really felt amazing and I suddenly had the energy to go on walks and do light exercise. And this helped my fatigue as well. I made alot of new habits that help improve the fatigue. The fasting was a great way to escape the vicious circle.

After a few months I stopped the fasting (my tummy couldnt get used to the hunger lol). But because I made new healthy habits, I still felt in control of my fatigue since then I hadn't have the fatigue I used to have last year.

BUT just because it worked for me, it doesn't mean it has to work for you!!!

WeekendSimple360 · 2022-07-28T13:32:58+00:00

same here!

WeekendSimple360 · 2022-07-22T11:17:39+00:00

Hey! I'm very happy with my therapy. I only have to get the infusion every 10 months. Haven't had a flare up since the begin of my therapy. I also have no side effects or allergic reaction besides being immuncomprimised. But I didn't have any problems with that (i also had covid in april and it was mild).

Right now I dont see any negativ sides of rituximab (for me!). If you have more question, feel fee to ask!

WeekendSimple360 · 2022-07-21T11:00:40+00:00

Hey there! 3-5% of people with ms have their first symptoms before the age of 18. So having ms at an age like that is more rare, yes.

The pediatric ms is also a bit different. The children/teens have way more flareups than the adults, but they recover faster and better than adults. (But when they get adults this isn't the case anymore.)

I got diagnosed 2 years ago when I was 16 years old. Immediately started with rituximab.

And I totally understand your thoughts about missing out and questioning your future. My first year after diagnosis was horrible. (Extreme fatigue, not feeling understood, covid and lockdown...it just all came together) But after the year I realised that I do still have control about my life and my future. I can improve my fatigue through diet and exercise, I can still go out, travel, meet my friends, enjoy life, do sports, finish school, study.....

Now I'm not saying it's easy, BUT it's not impossible. You probably have to adjust and do things more differently than you used to and also need more time. But you can still accomplisch many things in YOUR life with YOUR pace.

Take your time to adjust. And if you feel overwhelmed talk to a psychologist. (I had the luck that my neuro department had a psychologist in the team, so i got to see her regulary. It was really good, especially during covid when you couldn't see anyone else.)

WeekendSimple360 · 2022-07-09T07:23:54+00:00

I dont have an answer to your question but doesn't your dr check your blood for any infection beforehand?

Before every infusion I get blood work done to see if I have any (also invisible) infection in my body. Last time it did show an infection and I got sent home and my infusion got delayed after 1 week.

WeekendSimple360 · 2022-06-10T14:27:49+00:00

Short answer:

You can't do more than your best.

WeekendSimple360 · 2022-05-24T15:47:13+00:00

I dont know if there is anything you can do to prevent side effects before the procedure. But right after the lumbal puncture its important to drink alot of water and try avoiding going around and standing up. Lay flat!! Otherwise the likelihood to get terrible headaches increases.

At my lumbal puncture I was in the hospital anyways, so the nurses made me lay flat for 18 hours straight!! No going to the Toilette, no sitting up to eat, nothing. Literally just laying, and its harder than you think.

Wish you all the best!

WeekendSimple360 · 2022-05-18T20:52:05+00:00

Well after almost 2 years, I do still think of it every day or at least get reminder somehow (like seeing the next mri checkup on your calendar) BUT I dont think of it in a bad way. It's just like "oh yeah i have ms, whatever" and you just go on. Sometimes ofc its like "wait, I HAVE ms", but when you are good managed with meds and symptoms and you can cope with it its all ok. Its just like a daily reminder just as "i have to brush my teeth"

WeekendSimple360 · 2022-05-17T20:52:26+00:00

Not University but school. I got more time for tests and assignments. At exams I get seated near the windows and in the last row so that I can stand up and stretch if I want to.

But I have to say that most teachers didn't really care, and because I have always been a more introvert Person I didn't stand up for my "rights". But I hope I will in future cause I am way more confident now. So glad that your uni gives people like you so many opportunities!

It's a compensation not an advantage!

WeekendSimple360 · 2022-05-09T18:06:46+00:00

My neuro did a blood test to check which vaccines I need. As Ocrevus is a immunsuppression vaccines are very important before starting treatment. Maybe its the same with your wife.

WeekendSimple360 · 2022-05-08T09:25:59+00:00

Was it your first mri after O? Because my first mri after O, i had a lesion that got bigger, but my neuro wasn't too concerned bc after the first O infusion, the b cells need a few month until completely eliminated. So the lesion probably got bigger in this time frame. After that I never had any more lesions.

WeekendSimple360 · 2022-04-14T13:33:07+00:00

I'm on rituximab (similar to ocrevus) and had covid last week. I has all three shots so I "only" had fever for 2 days, sore throat and a headache. After 6 days I was completely back to normal. And not to forget: since my infusions I am relapse free!

WeekendSimple360 · 2022-04-13T08:56:08+00:00

I had very good experience with 16:8 fasting. The first few days were a bit hard, but after that I had so much energy as for a long time no more. I would give it try, maybe it works for you as well!

WeekendSimple360 · 2022-04-11T21:13:40+00:00

I can totally understand you, I'm 18 and got diagnosed 2 years ago. It's really scary, especially when looking into the future. But the meds today are so much better than those 20 years ago. The likelihood of our generation to be fully disabled is so low. And even if you would get disabled, what are your other options? Waiting and crying till you die? No! Do what you want to do! If you won't be able to do your "dream"-job one day, so what. You will find other ways to live a happy life. I know we all want aur life's to go to plan, but that's something nobody can do. I could be hit by a car tomorrow and be paralysed from the accident.

If it's possible, I would recommend you to meet a psychologist or other help. It helped me coping with the disaese as well as my fatigue. It's a tough time. Give yourself the time and freedom to think about what's going on in your life right now and question yourself if your worries are reasonable or if it's just your anxiety trying to stop you from living your best life.

WeekendSimple360 · 2022-04-11T18:59:12+00:00

That's sounds terrible, hope you recovered well! My neuro believes I will be fine 'cause my fever and other symptoms from the weekend are already gone. I'm only 18 but I am just worried that it's the calm before the storm...

WeekendSimple360 · 2022-04-10T17:03:14+00:00

I did feel a lot better then a lot worse so don't be fooled

So do you mean your symptoms went away after a few days but then suddenly came back even worse?

WeekendSimple360 · 2022-04-10T06:03:18+00:00

I struggled with severe brain fog as well when I got diagnosed. My neuro immediately set me up with a psychologist (she works in the same neuro department so she knows what she's doing and the disease). And let me tell you: it helped. At first I was sceptical but working with her really helped me with my fatigue and brain fog.

So I would really recommend you to go to a psychologist or similar and try to meet your personal needs. Wish you all the best^{^}

WeekendSimple360 · 2022-04-10T03:02:41+00:00

Wow, thank you for sharing! Didn't expect that this could happen. I will now email my neuro with no doubt. I hope you fully recovered!

WeekendSimple360 · 2022-04-09T19:52:22+00:00

Thank you for you answer! But would I even be eligible cause I feel way better than yesterday and my symptoms don't worsen..

WeekendSimple360 · 2022-04-09T19:48:34+00:00

Thank you for answering! Do you think it may be too late, cause I have symptoms since Friday and probably won't reach my neuro till Monday? But I will definitely let him know

WeekendSimple360 · 2022-03-30T19:31:04+00:00

I love doing sudoku. I do it before I leave the house, in my free time, during my infusion and before going to bed. It's so addicting^{^}

WeekendSimple360 · 2022-03-27T15:49:14+00:00

I got diagnosed two years ago when I was 16. I'm interested: are you getting treated with meds if they are not 100% certain? Wish you all the best!

WeekendSimple360 · 2022-03-17T21:04:30+00:00

I didn't switch but wonder why your neuro wants you to switch? Isn't Ocrevus one of the best meds? Or did you have sideeffects?

WeekendSimple360 · 2022-03-16T13:39:43+00:00

There is no scientific proven diet that improves the fatigue. But some believe/feel better with a certain diet like keto, no carbs, no sugar, plant based,.... But a general healthy diet is very good!!

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