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!

Tysabri or not Tysabri?

Hi all,

Firstly, can I just say how nice it is to get comments from people who read this blog saying that it cheers them up or they can associate with what I am saying. It is reassuring that there are people out there going through the same thing as me. I am always surprised that anyone reads this, I mean who wants to read about my life!!! But I love writing it....so long may it continue!

Secondly, as the title may suggest, I have been offered Tysabri. My MS has been 'highly active over the last year or so, so I am now eligible for something stronger that is hopefully going to stop the progression of my MS. But I know all these drugs are not without their side effects. I have to see my Neurologist and have another MRI scan before they can confirm I can have Tysabri. They want to check my brain to see that I have more lesions showing than last time, otherwise I am not eligible for it! I think that we are pretty much decided that if ok with all my checks, I am going to go for it. I want to give myself the best chance of fighting this disease.

Occupational Therapy have been back out to visit. We are now going to apply for a grant to extend the shower (so we can get a seat in it) and a stair lift. A stair lift would just mean I can go up and down the stairs with Ava and feel safe and not use up all my energy going up and down them! My MS nurse suggested I get a scooter to get out and about but I am not sure I am ready for that yet. They're for old people in my mind!!!!!!! I'm sure I'll come round to the idea sometime!











Photo update of Ava for you all!

Em xxx

My saviour...the perching stool!

It has only been 10 days since I last posted.....my resolution is still going strong! Occupational therapy came around to assess me and I have now got a few gadgets to help me. My favourite thing is my perching stool for the kitchen. It means I can cook, wash up and make Ava's bottles without having to prop myself up somehow! It means that Nathan doesn't have to do EVERYTHING! I also have a handle fitted in the toilet to heave myself up and they wanted to put an extra banister in but because these new houses all have plasterboard walls, they couldn't put one in (guess I'll have to save up for a stair lift!!). I also have a bath lift as the shower seat I wanted didn't fit in the shower. This is good, but those of you with MS will know that the heat from a bath is not great for the legs (well in my case anyway!). So longer term, they may look to extend and lower our shower so it is level to the floor and big enough for a seat. So all in all, I was very impressed with the help I received.

My darling daughter is just starting to wake so I'd better go and get a bottle ready for her. Just wanted to wish my mum a happy 'special' birthday for yesterday...although I did see her!
Em xxx

New Year's Resolution

Happy New Year to you all! As the title suggests I have a New Year's Resolution relating to the blog......to write posts more frequently. I feel very guilty that my last post was on November 21st as we are in January now. Oops! Well, where do I start?

Lets start with Ava. She is now nearly 3 months old and I can't remember life without her. We are getting smiles and giggles every day now and she can sleep well when she wants to! She was completely spoilt at Christmas, but thank goodness she didn't have many more clothes as she still hasn't worn all the clothes she was bought when she was born! This is a picture taken on Christmas Day:

My MS has not been great since she was born but I am thinking positive and hoping to build up my strength with physio and swimming. I have been injecting Rebif for a couple of months now and am still getting headaches occasionally through the night. They say to take paracetamol and sleep through the night but that is easier said than done with a 3 month old baby! I am also getting slight skin reactions around the injection site but they are nothing to worry about. My first blood test didn't show up anything so they are happy with the way my body is responding to the Rebif. I have had a second lot of steroids since Ava was born and I had another good reaction to them....but have since noticed the symptoms coming back again. My walking is pretty unsteady and I can't walk very far. The physio team think my balance is poor because my core stability has taken a battering with the pregnancy. So I am hoping that the exercises I am doing will help. I also went swimming last night for the first time since September and really enjoyed it. It was an effort to get ready, get into the pool, get dressed after and walk back to the car but I think it was worth it.

I am having a visit from occupational therapy today who are going to assess me and see if I need any equipment to help me around the house. I know they are bringing me a shower seat (as I get so hot in the shower I can hardly stand) and a perching stool to use in the kitchen. This will mean that I can make the bottles for Ava and cook tea without worrying about falling over!

I always read back through my posts when I've written them and I can never remember writing what I've written. It always sounds like someone else writing..not me! Anyway enough waffling,

Em x