What a week!

Hello everyone. Back on here after another spell away! Well, what a week it’s been. After a year on Tysabri I’m suffering with the worst relapse I’ve ever had which culminated in me collapsing in my Dr’s surgery this week in front of everyone, very embarrassing, but my thanks go to the unsuspecting patient who helped my other half carry me into the Dr’s room! I felt as though someone had flicked a switch and my body was shutting down. I’ve never experienced such debilitating symptoms in the 13 yrs I’ve had RRMS! Now on ordered bed rest from my GP & MS nurse, but to be honest, I don’t have the energy to do anything! It seems I may have also had a reaction to the 5 day course of oral steroids I was put on. Apparently this is quite common and next time they’ll try try a shorter course through IV. Always good to know these things after the event!!

So feeling quite despondent about Tysabri, though my MS nurse said this can happen and that I may never have a relapse like this again. Just wondered if anyone else on Tysabri has experienced anything like this?


Hi, I have never used Tysabri, but have seen some posts about it`s good and not so good points.

I just want to wish you a speedy recovery, so you`ll be fit again (well almost) for the festive season.

luv Pollx

I am not on tysabri,but i have had relapses like you describe, infact the last few months i have been getting the ‘turning the power off’ feeling, i describe it as someones pulled the plug, and i cannot function on any level, its so scary.you feel like you are dying dont you? i know when you stop the tysabri that it can cause you to have a type of rebound relaspe, sounds like thats what you have had,hope you feel better soon.

jaki xx

I had an horrific relapse after two years on Tysabri [caused by infection in the bladder] resulting in 16 weeks in hospital, leaving in a wheelchair no one expected me to get out of again. But I continued with the Tysabri, neurophysiotherapy, drowning/swimming and after 7 months was able to ditch the chair again.

Nothing like that has happened again and I am now past 5 years. There are plenty of things not right, but not any worse, and lots considerably better, than before I started Tysabri. Although I can’t walk far I can and do walk unaided on flat surfaces, otherwise I use an elbow crutch for stability.

Tysabri gave me back my life, of that I am convinced.


Dear Liz,

Your story fills me with so much hope - not for me, as I don’t qualify for Tysabri, but for others who struggle on with relapses and recovery.

It would be wonderful if you wrote your story and the MSS put it on the site. Inspirational news is hard to come by. You and Andy (Chubbster) and others who have got their lives back thanks to Tysabri are truly inspirational. You may not know this, but you are (yes, it’s MS, touch wood, fingers crossed and all that!).

very best wishes



I am wary of doing anything like that. I have no problem sharing here or on the FaceBook Tysabri page if there is a chance it will help others but as we don’t know what will happen with MS from one day to the next I wouldn’t want to jinx things.

I am not usually superstitious but the last twice I ended up in hospital I had finished The Times crossword all on my own…now I will never enter the answer to the final clue even if I know it.

I am really fortunate in that I am negative for the JC virus. That’s one test I was delighted to fail.

Andy is a great guy…with a big heart for sharing his experiences…particularly on the Tysabri page.


Hello everyone, thanks for all your comments, it’s great to hear such positiveness when you feel so pants!! Jaki, you are absolutely right, I did feel like I was dying and to be honest, I was really scared by it! However, I have just returned to work after nearly 3 months off. It’s going to be hard work, I was exhausted after doing one morning! I’m being phased back to work very slowly and I just hope I don’t go downhill again!

Anyway, thanks again for your support. I know I don’t come on here very often, but when I do and I see people have taken the time to offer me a supportive word, I really do appreciate it.


Hi Mary, glad you`ve recovered well enough to return to work.

Take it steady and if it gets too much, have a think about reducing your hours, eh?

luv Pollx