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What should I expect to happen now?...

Hi Everyone

I was diagnosed with rrms in January 2012 after a nasty episode in August 2011 which left me with severe right sided weakness and an episode of Optic Neuritis in December 2011, the effects of which are still going strong! Over the past couple of weeks I have been experiencing extreme dizziness to the point of nausea, loss of hearing in my right ear and loss of sensation on my tongue. Looking at my medical history it is clear I have had other episodes in the not so distant past including pins and needles in my hand starting in July 2010 and a severe bout of dizziness and vomitting in December 2011 which lasted about 6 weeks.

I saw my MS consultant in January, prior to this I had been seeing a neurologist who said that although he thought it was MS he wanted me to see the MS specialist before any diagnosis was discussed (my referral was then of course lost in the ehter for a little while but thats another story!) The MS consultant discussed treatment options and said that he would like me to start Tysabri, I had already done some research and agreed that I wanted to do this.

The consultant has referred me to an MS nurse and I have my first appointment with her next week. As far as I know plans are underway for me to start Tysabri as soon as possible. I understand every person is different and that sometimes there is little that can be done to alleviate the symptoms but I feel a bit like I have been left in the dark (literally in terms of my vision!) It’s really hard getting used to all of these symptoms and not being able to work or get about very much means time is really dragging, so although its only really been a matter of weeks it feels as though I have been waiting to see the nurse for months!

My question is what should I be expecting now? What will happen at my first appointment with my nurse? Will there be plenty of time for me to ask questions or are we allocated small amounts of time like at GP surgeries? Will this be the appoinment where I am tested for the JC virus? and if so what does that test involve? I have quite a phobia of needles, I think the lp helped me get over it somewhat (if I can get through that I can manage most needles) but I like to be prepared!

I’ve spent lots of time doing research but at the moment everything just feels completely unknown and that is a little scary. Ive spent a lot of time reading the forum and have found it really useful so I’m hoping someone can help to calm me down!

Thanks in advance

Zoe

I am having Tysabri for the first time tomorrow. The screening took a few minutes,just some questions about when I was DX,it’s all in my medical records so I told the nurse to get the info from there. Then she went through the treatment plan,explained what Tysabri is,how it works etc. This will be the time to ask all your questions, take a list with you as it’s very easy to forget once you’re there.

The test for the JC Virus is just a blood test. It’s your choice to know the results of the test, some people have chosen not to be told. I want to know. Personally, I’m not concerned about PML as my quality of life has been so poor this past year, I’ve been DX for 12 years,tried two other DMDs and had some very disabling relapses so for me the decision to take Tysabri was easy. As you are newly DX you must feel as though you’ve been railroaded, but it’s a good thing your neuro is so pro-active.

Appointments with MS nurses take as long as you like, so don’t worry about the time, but make sure you go prepared with a list of questions,you can also take someone with you if you like.

Good luck and you can always ask questions on here,take care,xxjo

DMD = disease modifying drugs

DX = diagnosed

Thanks Jo, its nice to hear from someone who can tell me what to expect. I will definitely follow your advice and take a whole load of questions with me, I think I’ll take someone else along as well to make sense of everyhing for me when my mind gets a but jumbled!

I was foolishly looking online earlier and read that the test for the JC virus is an lp, I dont think I could have handled another one so I am pleased to hear it is a blood test!

And thank you for explaining the anagrams that you use, I’m still getting used to them! :slight_smile:

Zoe xx

Hi Zoe, I was diagnosed in July 2010, was in utter shock and denial for about 2 months until, completely by accsident, found a book called overcoming multiple sclirosis by George Jelinek. Reading it encouraged me to take a proactive approach to the new situation I found myself in. It made a huge difference in my life and I would reccommend it to anyone newly diagnosed with MS.

Hi Moseleygirl

This is just to say that I hope that your first session with the MS nurse was good. It is all very scary - for me it was like tumbling in the dark onto a helter skelter. It does all come a litlle better with time and as Shebrew says - do try G Jellinek’s book. If you have already seen it he is a MD (I think) who like us has MS