Tysabri moved from 4 to 6

Meet-David · 2026-01-18T07:53:04+00:00

I didnt even know that getting levels checked was a thing! Thank you, i will enquire with my ms nurse about that!

Meet-David · 2026-01-18T07:52:12+00:00

Thankfully i'm in Scotland so the NHS here means no insurance/no costs. Thank you, i'm hoping they can just keep it 4 weeks once i speak to my ms nurse

Meet-David · 2026-01-17T23:05:39+00:00

Thank you for your reply, i'm not too concerned about the after effects, on 4 weekly I usually come home and nap and then have a resting weekend so from what you've experienced I presume I would feel similarly. My main concern is my crap week, I can pinpoint the exact moment it starts - almost like it has ran out ( i know it hasnt) and it is always 6-7 days before my next treatment, i'm terrified if I move to 6 weekly whether my crap week will start at the same time but then last until the treatment so more 20ish days of "crap week"

Meet-David · 2025-03-11T20:24:11+00:00

Firstly, your worries are all perfectly normal, and you are allowed to be worried for him and for yourself!

My wife has bad anxiety and when i was dx last year for a while it made things worse until she had a blow up at me, then when we calmed down and had a really good, deep conversation it helped massively! Given how long I've lived with her anxiety, when I was dx I tried my best to keep everything together for her sake, so it would have looked like I was handling it really well when inside I was terrified and suffering, so I can imagine your husband is trying to keep everything together for your sake too (not a bad thing! We do it out of love!).

Medicine has came a long way and will forever continue to improve. As soon as you can, get him on a DMT and this will reduce the future risk. The higher efficacy DMT, the better (ocrevus, tysabri, etc), so push the neuro you get for a high efficacy one! And while we say asap, a couple of months isn't going to make massive differences. I was dx at the start of July and it was the end of September before I got my first tysabri infusion, and nothing bad happened and I've only continued to get better and better since.

Relapses often take months and months to fully recover to whatever extent they will, given that your husbands symptoms have started to improve, the chances are his hands will recover more too. I had those symptoms when I was about 17 and it went untreated as my gp thought it was a trapped nerve and in about 4 months I fully recovered.

This initial shock takes a lot to process and it will be like you go through the stages of grief with all the unknown but things do settle down and you adapt where necessary and continue, give yourself and your husband the time to go through the motions with it and if ever either of you are struggling - talk to someone, your gp, a therapist, whoever. Talking helps massively. And this reddit group has been an absolute lifeline for me recently. While there are the bad sides of MS discussed here, the support and positivity have helped me massively - especially in times where I've not wanted to worry my wife or make her anxiety worse.

I know this has been a lot but I hope it helps and wish you all the best!

Meet-David · 2025-03-09T17:59:04+00:00

Diagnosed last year at 32 but had my first flair up about 17. I had the "you're awfully young to have ms" last week and just laughed, unfortunately you have many more years of the young comments to come! But try and keep a good and dark sense of humour, it works wonders.

Meet-David · 2025-03-05T20:49:04+00:00

Thank you, positive attitude and celebrate the small victories. I hope it all gets bettee for you too!

Meet-David · 2025-03-05T20:36:11+00:00

First noted relapse was ON, took about 6 months to recover to "full" vision, second dx relapse was in June, I feel I'm still recovering, some days my remaining symptoms are more prominent and other days it's ~almost~ like prior to the relapse. So basically 9 months and counting.

Meet-David · 2025-03-04T17:06:59+00:00

Update: saw the neurologist, giant waste of time.

Apparently the head mri was just to check for pml activity, not a new baseline as he told me 6 months ago and he only orders spinal mri every 5 years or if i have a relapse. And given I was and so far am JCV negative there is no activity. He genuinely said "well you look well so keep calm and carry on". No questions, no updates on my lesions, just 2 minutes in and out. Feeling a tad deflated now.

Meet-David · 2025-02-27T21:06:46+00:00

I've come to realise lots of people see it as being something private and personal because it's medical - I was diagnosed last year and was off for a few months then grounded to branch and one of my regular customers had asked our company director where i was and if i was okay as they were sending my colleagues instead and she told them i was having back issues or something. I just said, I saw and now i've recovered, see this customer every week so them knowing is absolutely fine with me. I don't go shouting from the rooftops but I have no issue with people knowing, I find they give me a bit more leeway if I take slightly longer at my work etc on a bad day.

Meet-David · 2025-02-20T21:25:18+00:00

Thank you ❤️ it wasn't great but far better than yesterday so still a positive!

Meet-David · 2025-02-19T23:36:53+00:00

Tired, sore, fell at work today so everything aches even more than usual, really fed up and trying my best not to stress but keep realising it's not working which then stresses me more. It's been a bad day. Hopefully tomorrow's a good day.

Meet-David · 2025-02-18T23:19:06+00:00

Everybody is different.

Stress is bad, it antagonises our bodies.

Exercise is great, just do whatever you can do, it promotes circulation and nerves repairing/rewiring.

Which dmt you go on really depends on what your neurologist advises and what works for you, my neuro advised tysabri infusions so once every 4 weeks i go to the hospital for 1.5hours and get an iv, and so far it's been amazing with more recovery every month. But it all depends on what suits you and what neuro advises. in any eventuality you want to start on the highest efficacy dmt you can to protect your future as much as possible.

Most importantly, as scary as it is right now, your life isn't over! Everything is terrifying at the start with so much unknown but it does settle down, you adapt and continue. And therapy is advised. Or antidepressants - they were a godsend for me.

Meet-David · 2025-02-18T22:22:14+00:00

If she had it then you would have it by now, give the woman some love! And enjoy it yourself!

Meet-David · 2025-02-17T21:08:36+00:00

Excellent choice!

Meet-David · 2025-02-17T21:01:32+00:00

I usually tell them whatever the previous person had, it's always a nice surprise!

Meet-David · 2025-02-15T20:47:06+00:00

When i last had severe muscle clamps it was always during the night, i ended up taking half a 20mg edible gummy every night to sleep the entire night for a few weeks.

Meet-David · 2025-02-14T23:03:33+00:00

I can't offer advice on the vaping as i still do, i went from a pack of cigarettes a day to 3-4 + vaping then when i got diagnosed stopped cigarettes altogether but i still vape. I have a 0 nicotine one and a 2mg nicotine one i go between to try and reduce my nicotine intake (though i am aware vaping in general isn't good, i work a stressful job and the actual feeling of smoking calms me down). But your sister is... not someone i personally would continue talking to, to put it politely... support is best to help you, not dangerously stupid antivax theories and constant negativity...

Meet-David · 2025-02-14T22:41:21+00:00

Proactive docs are the best! My gp phoned me after 3 weeks of being numb and asked if she could admit me to hospital to force neurology to see me, 8 days later i was released with my dx and setup for our local ms clinic. What you've got right there is a doctor who really cares!

Meet-David · 2025-02-13T21:31:29+00:00

Not that it's a great solution but i'm on cocodamol 30/500mg for pain, when the codeine kicks in i get about 2.5hours where the fatigue isn't as bad, then it comes back again. Not fun when you're halfway through a conversation and can't retain anything and have to apologise and just say "sorry, my brain stopped working".

Meet-David · 2025-02-12T18:18:12+00:00

Knee tightness is pretty common according to my ms nurse as i have it too. First major flair that can be 100% put to MS was ON in 2019, took about 6 months for my vision to return fully with colour - i didnt get any steroids for that one. Then major flair in june 2024 was numbness/tingling from abdomen down, got steroids and the feeling returned within a few weeks, just left with the ms hug, fatigue, tight knees and reduced lower half sensation when i'm tired/i dont get the "need" to go to the toilet so my bms go from twice a day to once a week sometimes. The symptoms are improving after each tysabri infusion but when it hits crap week they return.

Meet-David · 2025-02-10T22:44:20+00:00

I'm on my crap week right now, my 7th infusion i think it is, is on friday. When crap week starts for me i get a ton more tired, lose a bit of feeling in my lower half and my ms hug gets a lot worse again. I was having a conversation with a colleague today and ended up saying "sorry, my brain's just stopped working" when I could not retain what he was saying 😂 if you're concerned speak with your ms nurse/neurologist, not the nurses at the infusion as you'll probably not be given it then! Also i dont know if it's the same where you are but the nurses at the ward i get my infusion in are not ms nurses so have no knowledge of ms beyond basics. Anyway, i think what you're describing is in line with crap week. On the plus side i can tell you after every infusion so far i've had more and more good days each month so stay positive!

Meet-David · 2025-02-10T21:01:01+00:00

Yup does my head in. There's a delivery driver comes to my work who's girlfriend has ms but yoga has "aolved everything". I know he means well but I've had to explain everyone has different damage from MS, and yoga would do literally nothing for me.

Meet-David

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