Hi All,

Not been on here for a while but now I’m back begging advice!!

Had a relapse in June and then another at the end of October, Been signed off work since Halloween.

My ms nurse referred me to a different neuro and He told me that my ms is worse than I thought and it would be pointless having first line dmds. Therefore he recommends that I have Tysabri. BUT I have tested positive for JC virus, due to see him again next week to discuss everything…

I don’t really know what my other options are? Worried about tysabri, what happens if I don’t have it? Can you be penalised if you refuse a certain treatment? Worried in general about the future…

Not expecting all the answers from you guys just any experiences you’d care to share would be helpful.

Thanks in advance for any advice you all give, you’ve always been great in the past

BeckyX (formally rebecca1981)

Becky Sorry to hear that, my neuro said exactly the same to me 4 weeks ago. So tysabri was offered and that’s what I’m going to start, I have to do everything to fight this. The choice to go on it is yours and no one else’s . I asked my neuro to tell me bluntly what would happen if I don’t go on it and he said " ms will get you ". Good luck in your decision Take care Gray xx

I am sorry that you are having such a torrid time.

You have an awful lot on your plate at the moment - dealing with the current effects of active MS, dealing with the implications of that (everyone thinks that they are going to be one of the lucky ones whose MS is fairly quiet, and it is a heck of a blow to find out that this is not so) and now having the business of treatment options (also alarming) to think about, plus you are JC+, which is not what a person wants to hear when she is considering starting Tysabri. That’s a heck of a witch’s brew. No wonder you are feeling it.

One worry to cross off your list right now is the fear of anyone holding it against you if you decided against Tysabri. There are plenty of people who refuse it irrespective of JC virus status, and some who come off it when they turn out to be JC+, even when they have been doing well on it. No one thinks any the less of them.

The thing to concentrate on, I think, is making sure that you plan your consultation and get your neurologist’s answers to those questions that you have raised. To your list I would add, ‘What extra steps will you be taking, given my JC+ status, to monitor my health?’ He/she will probably talk to you about the particular level of risk that your blood test indicates - the current, more sensitive, tests will give a lot more useful information than just + or -. So don’t panic about the + bit. These days a person can be just a little bit +, with a risk not much greater than a negative person. It isn’t like a pregnancy test anymore, when you either are or you aren’t. And, as you probably know, the risks during the first couple of years of treatment are low for pretty much everyone.

Your best resource is information, and your neurologist is the best source of that. No one can give you certainty, and it is always a matter of playing the percentages. But the more hard information you have, the better the chance of your decision being a well-founded one. One thing I would say is, do give proper weight to the risks of MS. You can’t opt out of those! And your experience so far has given you a flavour of what poorly-managed, aggressive RRMS can do to a person. Remember that there are no risk-free options available, alas.

For my part, I have been on Tysabri for nearly 3 years now, and no relapses. Years ago, my JC virus test came back negative, but the newer tests are revealing that plenty of people who looked negative then were actually low positive all along, so I do not set much store by that. For me, it has been little short of a miracle. MS had taken plenty of lumps out of me by the time I started, and that disability is permanent, but there has been nothing big and new, and that has just been amazing. Quite honestly, I would have tried anything, JC virus or not. I am glad to have had the opportunity.

Good luck with whatever you decide.


I have little to add to Alison’s excellent advice.

Except to say that I declined the firstline injectables over three years ago. My neuro continues to talk to me about exciting alternatives he hopes will be available soon, so there’s absolutely no suggestion that just because I once said no to something, I’ve automatically ruled myself out from anything newer/better. Indeed, I’m confident that if I rang up today, and said I wanted to reverse my original decision, there would be no problem with that either.

Your decision is your decision - absolutely no sort of penalty or coercion is allowed. And your decision about one treatment cannot be used to restrict access to others - with the limited exception that some secondline treatments are only available to people who have tried and failed with a firstline one. But that’s not an issue in your case, as you’ve been proposed for secondline straight away.



Hi Becky, I can imgine how worrying this is for you. I`ve not been in the same situation, so cant offer any experiences about it.

All I can offer,is my best wishes for whatever you decide to do.

I think it is good that you have time to consider all the pros and cons.

luv Pollx

Hi and Thank you for your replies,

I was Dx in October 2012 and have never been offered DMDs. I can’t help but think that if I’d been treated before then I wouldn’t be facing all this.

After going through my history (well everything I could remember anyway!) he said that 4 relapses in approx 2 years is pretty active and secondline treatment is the way forward. Again I’m pretty annoyed that I haven’t been offered firstline treatment before. Maybe I’ve just slipped through the cracks?

Anyway got some thinking to do before seeing neuro next week…

Thanks again


Hi Becky Really hope you get the right advice and treatment this time. Reading your post it does sound as though you should have had the DMDs before. However can’t change what’s happened so best to channel what energy you have to thinking positively to the future treatment. Sounds as though you do have what’s called capacity to consent. What this means is that you can refuse any treatment even if the docs think its the wrong thing for you to do but you are adamant that you are right and its what you think is the right thing to do for yourself. Good luck in your journey. Min xx