Hospital Stay!

Hi guys,
I have a genuine reason for not writing this sooner and updating you all on my progress.......I have been in hospital for the last 5 days! It all started a couple of weeks ago when I wasn't feeling 100% but I couldn't put my finger on what was wrong. My symptoms could be really good one day but really bad the next. I woke up last Thurs morn and my legs didn't want to do much at all and it took me a very long time to even get dressed and get downstairs. Nathan took the day off work to help me with Ava, by midday I felt better and almost sent Nathan to work. Come the evening I had a very high temperature which affected my vision, my legs weren't doing anything and I couldn't hold anything. To cut a long story short I ended up being taken to hospital in an ambulance. Of course we were all panicking about the dreaded PML. After a number of tests it was established I had a nasty kidney infection which then led to another discovery of a new kidney stone, which I do not need! I hated being in there away from Ava but I had to have a course of IV antibiotics. Nathan, my family and the in-laws were fantastic in looking after Ava so Nathan could still work, and also feeding him so he didn't have to worry about eating.
The MS team are sure that it wasn't the Tysabri that made me ill, unfortunately it just makes you prone to getting infections. And as I am prone to getting UTI's (Urinary Tract Infections) I'm not surprised.

I had some very sad news a couple of weeks ago, my coach at swimming passed away. Mike was so inspiring, even when I was diagnosed with MS and I couldn't train as hard as I used to,he always encouraged me to keep going. He leaves a big empty hole in our swimming club and will be sorely missed. RIP Mike xxx

My next infusion is on May 29th so watch out for my next installment on www.msrc.co.uk
Bye for now,
Em xxx

1st Infusion of Tysabri

Hi all,
This is going to be a very short post as I am shattered to say that everything went well with the first infusion. They took 3 attempts to get the cannula in but once up and running it was fine. Felt a little sick last night and today I am so tired that my body doesn't want to do anything. I am hoping that this fatigue will pass, I will write again soon in more detail.
Here's to positive thinking that the Tysabri will help,
Em xxx

Where do I start?

Hello all,

Yet again, it has been longer between posts on here than I would have liked so I have lots of news to share. Firstly my beautiful baby girl is over 6 months old now. I can't resist sharing another pic of her with you:

She is a good girl and is giving us a good nights sleep which is much appreciated and helps us get through the day! We are just getting her first passport and the photo above will be her picture. We are going to France in June with the family which will be lovely. I just hope she is ok on a plane.

It was Nathan's birthday back in Feb and I promised him tickets to watch Liverpool play at Anfield. I was unsuccessful in my first attempt but successful on the next. We are going to watch them against Newcastle next Sunday. You see, I say attempts to get tickets because if you want a disabled ticket you have to apply with all your details and then names are drawn in a ballot to see if you get a ticket. I have a wheelchair ticket and you can take up to 2 assistants (who are free) so it's a fuss to apply but well worth the value. We are also in the Kop grandstand and if you know about Liverpool that is the place to be so Nathan is very happy!

I went for a driving assessment yesterday for adaptations to my car to get me back on the road. It was very exciting but also very nerve wracking. My eyesight was tested and it wasn't very good due to the damage caused by Optic Neuritis but it was legal to drive...phew! I went out and had a drive of an adapted car - very very scary after driving with my feet for 10 years and not driven since August last year. But I started to pick it up! I am getting a steering lever for accelerating and braking (just a push/pull lever) and a steering ball on the wheel. Will definitely take some getting used to but will keep me a bit more independent.

Tysabri, Tysabri, Tysabri....I start it on Monday (27th). I am very excited but a little scared. I just want to get it started now. Of course I will keep you up to date with how it goes. I am also doing Physio once a week and using tilty table things which enable me to stand up straight for a short while and not look like the Hunchback of Notre Dame!

I think that's all the news so far, bye for now,

Em xxx

Tysabri

Hello all,

Well, as the title suggests I am starting Tysabri treatment. I saw my neurologist last week and he said that the scan had shown up new lesions so I was eligible to try Tysabri if I wanted to. So I am going to go for it and have been given April 27th as my start date. I am going to be writing a Tysabri diary of my experiences which you will be able to read on the MSRC website (http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2336 )

He also pointed out from the scan that I was currently having a relapse (which I suspected) so they gave me another course of IV steroids last week. I responded really well to them until 2 days after the course finished I woke up in agony. I have never known pain like it. My knees felt like they were grinding together and I couldn't even stand up. It was pretty scary. I suspected it might have been all linked with a water infection and was given antibiotics for this the next day and the pain everywhere else started to subside. I don't want to ever experience that again. But on the upside, although weak, my legs are stronger than they were.

As you can see from the picture, Ava is getting big now. She was 5 months last week. She makes all these problems bearable. And I must mention my wonderful husband who is such a great support for me. Plus he told me I don't mention him enough on here!!!!

Em x

Where does time go?

Hi guys,
I am so naughty not updating this for a while. I don't know where the time goes.....actually I do. She is called Ava and is the biggest time waster I know! Can you believe she is 20 weeks old today? The picture above is of her meeting our friend's little boy Joshua for the first time. He is 3 weeks younger than her. They were sooooo cute together. We went to see them at the weekend and just stayed in, watched the rugby and had a takeaway with a glass of vino. It was a welcome change of scenery for me.

My new car is due to be here at the end of March. I have to have a driving assessment in a couple of weeks to see which would be the best adaptations to the car for me. I'm a little scared as I haven't driven since August last year. I'm sure it will be fine though. I have also ordered myself a scooter. These 4 walls are finally driving me insane, it is like groundhog day every day. At least with a scooter I can strap Ava to me and go for a bit of a cruise ha ha!! Nathan has just bought a new car (a mondeo) so it has enough room for me, Ava and all our bits and bobs.

I had my MRI scan on Wednesday, I forgot how loud and boring they are. At least it's done now. I spoke to my MS nurse yesterday because we'd talked about steroids after the scan. My neurologist is going to see me next Tues instead of the 24th to discuss the options. I am hoping he will have the scan results so if I'm eligible for Tysabri we can get cracking with it.

That's all for now,
Emma x

I have wheels, lovely lovely wheels!

Hello all,

Have posted below about some trials into MS so go and take a gander if you are interested. Well well well, what can I say? So much has happened with my frame of mind over the last couple of weeks. About a month ago, my mum suggested that I go into town and use one of the mobility scooters to try them out. I said NO WAY quite adamantly, 2 weeks later I found myself on one. To me, in my head they were for larger or older people, not a 27 year old young mum. When I spoke to my MS nurse about this, he said I had to use my stubbornness to get myself out and about, as scary as it might seem. So I found myself on the phone booking a free scooter at a shopping centre. At first I was a bit embarrassed, but when I realised no one was staring a me, I was fine. The only problem I found was that some shops are not designed for scooters and are a little tight. You end up nearly taking racks of clothes out or knocking over rails! And reversing is a whole different matter.......try going forward into a lift and then getting out of it beeping like a reversing lorry!!!! So I am seriously considering buying a scooter. Watch this space.

I HAVE BOUGHT A CAR! By continuing on the theme of getting out and about I have redeemed my disability living allowance mobility component against a new car. I am hoping to get hand controls so when my legs are having an off day, I can still get out and about. Here is the link for those of you who are interested in it :
http://www.ford.co.uk/Cars/NewFiesta?campaignid=Fiesta&advertiserid=Google&bannerid=Ford_Fiesta

It is a 3dr and magenta on the pic but I have ordered a 5dr automatic in bright blue.

My Physio team have also given me a rollator walking frame (as pictured below) for around the house but I think I will probably use it around and about.

Ava is crying so must go and make milk!
Take care,
Emma x

Trials

Hi all,

I have been approached and asked to advertise some trials into MS on here. Just because I may be able to attract some different people who are interested in helping. Here is all the info you need:

A Clinical Research Study Evaluating An Investigational Medication for Relapsing Forms of Multiple Sclerosis
Medical researchers are enrolling people in a worldwide clinical research study for people with relapsing forms of multiple sclerosis (RMS). This study will assess the safety and effectiveness of an investigational study medication versus placebo (an inactive substance which contains no active medication) in people ages 18-55 years old with RMS.

The investigational medication used in this study is called teriflunomide (ter-i-flün-ō-mïde). It is derived from leflunomide (le-flü-nō-mïde), also known as Arava®. Arava® is already approved in many countries for the treatment of rheumatoid arthritis, another autoimmune disease.

The first step in determining eligibility for this study is to take the pre-screening questionnaire either online or on the phone. You will be asked a series of questions related to your health and be given additional information about study site locations. Visit http://www.tower3.msstudies.com/ or call 1-866-565-0245 today to learn more about the study and see if you may qualify

Happy trialling!