Yay… finally my euro appointment day! Baby changed and fed… list of instructions left for hubby, and now at the ungodly hour of 6.30 its time to get ready for my lift :smiley:

Hope i get some answers today!! fingers (and toes if i could feel them) crossed !!!

Hope it goes well for you, good luck :slight_smile:

sonia x

I have crossed everything that I can physically cross.


Good luck, let us know how you get on. X

Well, that was the quickest appointment ever lol very impressed…

…so its RRMS, its aggressive and I’ll be getting Tysabri… !

Dont know what is an appropriate response to that so how do you feel?


…mixed feelings… im very happy because i know Tysabri is highly praised by most that use it. Not bothered about the aggressive part, because ive been quite aware of that and being told that doesnt really change anything. But, i AM very nervous and wary about the JC Virus / PML thing, but after much reading I have found out that it is very rare, and not quite as untreatable as they make out.

Plus, since about 2005ish…

"As of September 2, 2010, Biogen Idec Inc. disclosed 5 more cases of PML. This brings the total number of cases to 68. The also reported that the number of deaths from those that developed PML rose by 2, bringing the total deaths up to 14. Of the total number of PML cases, 28 were in the U.S., 36 were in the EU, and 4 were else where. "

Thats not too bad a risk. Still scary but I know they’ll keep a close eye on things!

Congrats? Sorry? Hard to know what to put for a new diagnosee! At least you know for sure now.

Have you asked for a JCV test? If it’s negative, the chances of PML are virtually zero (and apparently adults don’t tend to catch it).

Karen x

When you look at the potential benefits and the huge number of risks we take everyday without a thought I think I would be in your camp of bring it on.

Even though you were expecting it I have no doubt the black and white of it now being very real may hit home at some stage.If it does you know where I am aswell as your huge network of ms buddies.

Take care


Yeah he did say about the JC Virus test, so I will be getting it, but in the first instance he wants me on the Tysabri urgently, so looks like that will come first!

Sorry about the dx Mrs P. It is good to know what it is for sure though. Just take it a day at a time at the moment. Don’t think too far ahead. Glad to know you’re getting dmd’s to help you. Thinking of you, Teresa xx

Cheers Pip… and cheers all. :slight_smile: x

I’m sorry you’ve joined the club.

It’s never nice to hear, but at least it’s an answer, as you say. And, as you also say, you did not need the neuro to tell you it was a bit active! And it’s good to that the wheels are already in motion to get you the treatment that gives you the best chance of calming things down. Hugs from here.



Always difficult to get a dx… but better the devil you know than the devil you don’t. At least you know what you’re dealing with and now you can get treatment and that is a plus. Good luck with the tests and treatment.

Expect mixed emotions… one day at a time eh?

Pat x

How are you feeling today? Just a query did you see the consultant whose name begins with M ?


Lol pip yeah, he was awesome as usual! Think I got lucky with neuro! Yeah I’m feeling ok today, got maself a little baffled last night with everything but after a sleep I’ve kinda decided its just something that needs to be done so just get on with it really x

So how did it go?

luv Pollx

Hi, got my answer…so now you have your dx and treatment is available. many folk are fine on tysabri…but I can see why you are concerned about having it.

luv Pollx

Glad your out of limbo but sorry about the dx. Keep positive it is not the end of the world and there’s life after a dx, Hlth, Chis x

Can I get one on prescription, then?