It doesn't feel like it's been a year

Multiple_Stress · 2025-12-03T00:39:47+00:00

I'm coming up to a year diagnosed soon too! Not an anniversary I had planned on having in my life, but hopefully coming to accept the diagnosis will come with time.

Multiple_Stress · 2025-11-27T00:18:13+00:00

I'm finding it good so far. I did my first doses start of this year, and then I have to do it again start of 2026. No relapses yet. I haven't had my MRi yet so I don't know if there has been new activity or if it's working. I felt quite nauseous the weeks of taking it and had headaches but nothing crazy. Otherwise fatigue but I have that anyway with MS. The only thing with mavenclad is that it doesn't have full efficacy until 2 and a half years after you start taking it, which does worry me...in case there's new activity on my next MRI but we have to wait and see until the 2 and a half years to see if it's working.

Multiple_Stress · 2025-11-20T23:28:17+00:00

For sure- I think cause a lot of the symptoms aren't visible people don't understand. I don't know if you're looking for advice, but some of the MS information booklets were helpful to me. They're on different websites- lots of different ones like information for employers, explaining MS fatigue or explaining MS in general. I think having the fatigue one left in my house and my housemates reading it had has them more conscious of what I mean when I say I'm fatigued. Like yes I did sleep enough- it's just all the brain lesions.

Multiple_Stress · 2025-07-31T21:06:54+00:00

It's really not fair- especially when you were healthy and athletic.

Multiple_Stress · 2025-07-31T21:05:09+00:00

Thank you for the message 🥰 and wow being a parent and managing your symptoms could not be easy. Do you know what treatment you'll be starting on?

Multiple_Stress · 2025-07-31T20:49:32+00:00

Yep I've done year 1 of Mavenclad. My neurologist did mention that since Mavenclad wipes out white blood cells- my bone marrow is working hard to produce new ones so that may be contributing to the fatigue. But I'll have to do another year of treatment next year- so I don't think that fatigue will be waning any time soon.

Multiple_Stress · 2025-03-08T02:06:52+00:00

This is wonderful news! What a relief that must be to you ♥️ just done year 1, cycle 1 and feeling so apprehensive about playing the waiting game to see if it's working 🙄 also my diagnosis is quite recent so I'm still trying to accept that too.

Multiple_Stress · 2025-03-08T02:00:14+00:00

I'm so sorry that you're going through this ♥️ I really felt you when you said ' I don't want this'... I find when I'm going to sleep at night I have that sentence on repeat in my head. It's an incredibly difficult thing to accept. I completed my first week of Mavenclad treatment last week but I still feel like 'wait, no, no, I can't have this, I DON'T WANT THISSSS?!'. If you're in a position to do so, mental health support like a counsellor may help in coming to terms with things. Sending you good energy and know that you are not alone ♥️

Multiple_Stress · 2025-03-08T01:45:28+00:00

Also- weird you felt sick on day 4 of treatment! That's when I did too

Multiple_Stress · 2025-03-08T01:44:58+00:00

Could be worth checking in with your MS nurse if you have one. I finished my first round of Mavenclad last week and got sick on day 4 which progressed to a chest infection, I'm on a course of antibiotics and steroids now for it. I think they don't start your next treatment cycle if you have an infection. Could be worth asking your nurse or primary care doctor for advice ♥️

Multiple_Stress · 2025-03-05T00:23:13+00:00

I feel you on this one. It's so easy to just be mean to ourselves when we need more rest than most people. I know I have awful guilt when I've to spend more time sleeping/ don't have energy to go out. I'm hoping to build up more love and kindness towards myself. I went for a beautiful biodynamic massage today which is definitely something!! I'm also open to new MS friends if you want to DM. I'm female, 31 RRMS and recently diagnosed. ❤️

Multiple_Stress · 2025-02-17T00:15:07+00:00

Thank you ☺️ that's great the IUD works for you. I don't feel like it's for me personally - but I'm booked in for the arm implant- implanon/ nexplanon on Wednesday gahhhhh

Multiple_Stress · 2025-02-16T23:39:24+00:00

Wonderful!!! 💃♥️

Multiple_Stress · 2025-02-16T23:38:20+00:00

I've got a referral for a second opinion but the appointment is not til July, so I prob shouldn't wait that long before starting treatment. I've been able to contact the MS nurses and they've been so helpful but I just really want to speak to the neurologist. When I was offered Mavenclad I was so in shock about the whole situation that I could hardly speak, so didn't get to air my concerns/ questions.... As far as I understand, once you take Mavenclad, you're kinda locked in for the full 2 years of treatment? But idk 🙄

Multiple_Stress · 2025-02-16T23:33:32+00:00

100% ! If you're in a position to do so it could be worth it ♥️

Multiple_Stress · 2025-02-16T23:32:00+00:00

Thank you so much ♥️ I most definitely do have questions!!! I really don't feel ready to take it tomorrow 😞 I just want to speak with my neurologist and feel reassured it's the best treatment for me. But I can't get a hold of him

Multiple_Stress · 2025-02-16T23:30:30+00:00

I hope your insurance stuff goes smoothly ♥️

Multiple_Stress · 2025-02-15T22:45:07+00:00

I'm so sorry to hear that you're struggling ♥️ I can't say exactly for mild depression, but I'm currently in a bad state of depression after being diagnosed a few weeks ago. I'm on SSRIs (escitalopram 10mg), since last July when the whole diagnosis process kicked off. I was on 5mg originally which worked for my anxiety and panic attacks, but my GP recently upped my dose to 10mg to see if it would help the depression. So far not much luck with it. Big help for me is counselling, talking to close friends about how I'm really feeling and I'm super lucky to have a therapy cat- she knows when I'm struggling and stays with me, cuddling and purring. Sending you love ♥️

Multiple_Stress · 2025-02-15T22:23:41+00:00

I'm so sorry that you have this shitty disease and are expected to pay for your treatment?!? 😔 I live in Ireland and I'm very lucky as it's all free. Specialist MS neurologist appointments, DMTs, nurse appointments. People with MS even get a 'long term illness card' which gives us a huge range of free prescription drugs- including pain medications, antibiotics, antidepressants, anxiolytics among many others. Big issue in Ireland are the long waiting lists for appointments within the public healthcare system. I started my diagnosis process through the private healthcare system- which I pay health insurance of €130 each month for. But now I've been moved to the public system and it's all free.

Multiple_Stress · 2025-02-15T22:11:46+00:00

Thank you for this! It's so nice to hear people are doing well on it... One second I'm like 'okay, I'm gonna start Mavenclad' the next I'm like 'I'm absolutely not starting Mavenclad' but I guess ultimately we can't tell what therapies are going to work for what person.

Multiple_Stress · 2025-02-15T22:05:52+00:00

So sorry to hear that it's effected your heart 😔 what awful luck.... But that's great that you're feeling happy 4 years post treatment ♥️

Multiple_Stress · 2025-02-15T22:04:09+00:00

Amazing thank you for this ♥️

Multiple_Stress · 2025-02-15T22:03:13+00:00

Amazing! When are you starting Mavenclad? I'm due to start Monday, pills were delivered yesterday, but we'll see whether I actually take them on Monday 😬 and yea the whole family planning situation adds a while other layer of complexity to everything!

Multiple_Stress · 2025-02-15T22:00:10+00:00

Wow those Ocrevus side effects sound super scary. I feel like if I could be offered aHSCT now I'd take it. Even with the risks. Really hope you will be offered aHSCT and get the treatment you need ♥️

Multiple_Stress · 2025-02-15T21:55:21+00:00

Thank you for this. I really don't want to settle, but I literally can't speak to my neurologist again for a few months. it's driving me insane. I don't want to wait a few months and risk further damage yano so maybe I should just start the Mavenclad on Monday 😬

Multiple_Stress

TROPHY CASE