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Hi, my name is Emma and I am 27 years old. I am married to Nathan and have a 6 month old baby girl called Ava. I am a primary school teacher and was diagnosed with MS in 2006.
Previous Medication: Baclofen, Kepra and Rebif from Nov 08 to March 09
I am not currently taking any medication
My MS History:
First symptom (2000): Optic Neuritis - In me, I lost my sight and went completely blind for 3 weeks. My sight came back but still a little like I've looked at the sun in the one eye. I now wear glasses for long distance.
I have since had several relapses including slurred speech, numbness in my legs, the MS hug and problems with balance and walking.
My main problems:
Walking and balance
Dexterity in my hands
Numbness in patches from my waist downwards
Uhthoff's Symptom: An increase in symptoms due to exposure to heat, my eyesight gets particularly bad
Cold hands and feet
Whilst pregnant with my daughter I relapsed affecting my balance. Since having her, I started Rebif and appeared to have several relapses whilst on it. My MS has been highly active and disabling since having Ava which is why, in agreement with my neurologist, I have decided to give Tysabri a go. If Tysabri stops my MS from getting any worse then that will be fantastic, but as with most people on Tysabri
there is a little part of me that hopes for an improvement in my symptoms. Watch this space...
I also write a blog about living with MS:
www.emmalouiserichards.blogspot.com
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3rd and 4th Tysabri infusions
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Hello all,
Since my last post, I have had another two infusions. They were my 3rd and 4th, but the 4th came a little earlier than expected. After my 3rd infusion I felt awful, very tired for the 3 weeks that followed. I can normally manage to walk up our stairs at night but this month I have had to go up them on my bottom. I don't know why this has been the case. It might have been the very hot weather, or just a bad month.
Anyway, I was supposed to have my 4th infusion next Monday but this Monday I had a phone call to say could I go in tomorrow (Tues)? After lots of negiotiating, I managed to get in for it. I felt very tired on Tuesday night, but have been feeling much better since. My walking seems to be a lot better but we will see, don't want to jinx any effects! One thing I have noticed since being on Tysabri is that my body seems a lot hotter and my skin feels very hot. I also seem to get a lot of facial flushing. But overall, I am persevering with it with more hope than I've ever had, so it can't be that bad!!
Next infusion: 17/08/2009 |
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Infusion No. 2
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Hi everyone,
Well since I last wrote after my first infusion, my life had been somewhat eventful to say the least! The fatigue I had after my first infusion probably lasted about a week. I wouldn't say I noticed any great improvements after that, but I did manage to walk up the stairs in two go's (5 steps then 6) which I haven't been able to do for a long time. So, that gives me hope!
For those of you who read my blog, you will know I had a little hospital stay just over a week ago. I started feeling unwell (with PML running through my head!) and to cut a long story short I ended up in hosptal with a severe kidney infection. I am prone to getting them but Tysabri suppresses your immune system so if you are susceptible to having them you may get more! I stayed in for 5 days and was eventually released with further antiobiotics. Then about a week later, a day before my next infusion, I felt familiar symptoms so was put on more antibiotics to make sure the infection didn't come back.
I went to the hospital on Friday morning at 9, only to be told by the nurse that I probably wouldn't be able to have my infusion because I was on antibiotics. I waited for my MS nurse to come up and he said that he was happy I looked well and after speaking to my consultant, if my urine had no white blood cells in, we could go ahead. It was clear and I had the infusion....yay! 4 days on and the fatigue I had initially seems to be going quicker than last time. We are off to France for our first holiday with Ava in 2 weeks (armed with precautionary antibiotics!) and my next infusion is on June 29th when we return. Bye for now!
Emma |
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Infusion No 1 27/04/2009
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Well it is my first infusion tomorrow and I can't sleep. I am excited but also a little scared, I think it is the fear of the unknown (and of course the dreaded PML!). I think you are convinced that the minute you are hooked up to the drip, you are going to have a bad reaction and you'll be really poorly (well that is what I thought!). Although the reality is a lot less scary and the side effects at the time are relatively minor.
So, the day of the infusion, we got to the hospital to find I am only the 3rd person in Gloucestershire on Tysabri and the other 2 were already there getting hooked up. They have seen great improvements after 7 infusions so I am already hopeful and can't wait to get started. My MS nurse asked if there was anything I wanted to know and did all the blood pressure and temperature checks. Everything was fine so they tried to find a vein...it was like finding a needle in a haystack! 3rd time lucky and we were up and running.
I got a little flushed during the infusion but felt fine. I stayed for an hour afterwards to be monitored and all was fine. It was the next day the tiredness hit me. I could hardly do anything and now writing this 2 days on, I am feeling much better. No change in my symptoms, just in my attitude...I live in hope!
Next infusion 29/5/09
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