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    You are here : Home » Get Involved » MSRC Interactive » Tysabri® User Diaries » Fabiola's Tysabri Diary

    Fabiola's Tysabri Diary

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    Fabiola

    Hi! Im Fabiola
     
    I am 31 years old and live in UK since 2004, I am chemical engineer.
     
    The picture is me and my lovely husbandin my brothers in law wedding.

    I was diagnosed 2007 and until 2009 my MS was dormant.

    • In may 2009 I had a bad relapse due to stress at work which affected my left leg. After some time (about 2hr) walking I started to limp and stop to recuperate.
    • In Sep 2009 I had other significant relapse which affected more my walk and also I had double vision for 5 days.
    • In October 2009 (one week before my wedding) I had a mayor relapse which kept me limping badly and with fatigue. This lasted for a month and then I started to see some improvement. In January I decided to go back to the gym. I was doing about 20min, 3 days a week.
    • Feb 2010 I had another relapse which made me use a walking stick until October 2010.

    At the end of May I started on Copaxone but my relapses were quite strong.

    • In October 2010 I had another bad relapse and I started to walk with a walking frame. My fatigue has been bad and my balance is really bad too.

    I decided that I needed something much stronger than Copaxone, that’s why I started on Tysabri on 26th January 2011..

    Symptoms:
    •         Fatigue
    •         Drop left foot
    •         Numbness in left hand (fingers)
    •         Dizziness
    •         No balance
    •         Bowel problems
    •         Swallowing issues

    Use of three wheeler walker

    11th infusion – 2/11/2011 (written 7/11/2011)

    I was really depressed few days before the infusion. My legs were wobbly and I was very unsteady. Lesson learned: I can’t try to challenge my balance as it did cause me a bad fall few days before Tysabri. For some reason, most of the time when this happens I go flat on my face; and this time my nose and shoulder received most of the impact.

    After the infusion, I felt the energy and a bit of balance coming back to me. My depression went away and I’m now feeling positive like before. I’m back to my exercise routine with my new physio; I am repeating my last month’s routine and timing as I could not get the most out of it. My bathroom was refurbished to fulfill my needs and my house was a mess.

    I also need to be surrounded by good and positive people and I need to be busy when I am working.

     I noticed that I am still feeling embarrassed because of my disability; I don’t feel like frequenting my old friends anymore. I am isolating myself and I need to stop doing it. I suppose that people understand my situation which at the end of the day it is not my fault.

    10th infusion - 5/10/2011

    Few days before the infusion there was a heat wave that knocked me down big time like never before. (heat + days close to infusion = big fatigue and depression)

    The infusion went really well, no eventuality as always. This infusion has really given energy to the point that I have been doing extra hours in the office. I can’t believe it. It did not give me headache either like previous infusions. Apart from that, I am still having issues with my balance and foot drop, nothing that cannot be overcome. Next week I’m buying my electric scooter to use in the office and also I am having the bath removed from the bathroom. Slowly things get solved, but I need to be patient.

    Apart from the negative physical things that my MS has left behind with me, it has also given me more patience and more brightness to find the best solutions for simple and difficult things in my life. Not everything is bad. Now I appreciate more every single thing I have achieved but I cannot avoid seeing some people like stupid because they complain for simple things and also don’t appreciate what they physically can do. Eg: use lift instead of stairs to go to first floor in a building.

    9th Infusion 10.9.2011 (written 13.9.2011)

    The infusion went fine, no problems at all. This time I decided to use a wheel chair to the neuro-day unit for energy conservation. However, it was the worst decision I ever took as it cost me leg weakness afterwards.

    It is incredible that I need to keep mobile as much as possible, otherwise my muscles give up. As a result, next day I overdid exercise for 1 hour, I felt worse but I got my legs back. I am doing more exercise than before (almost doing 3 hours a week).

    My balance is still bad but I am planning to reprogram my exercise routine focusing on the core muscles. The spasms are getting better, probably because of the medication (clonazepam), stretching and the weather is getting cooler. I can tolerate the heat better than before which is a big improvement!

    Look forward to my next infusion and hoping that one day I’ll recover my balance…

    7th infusion 13.7.2011 (written 19.7.2011)

    My infusion went well, still walking from the car to the neuro-unit with my walker. This time was quite bad as I could not walk fluently, my feet kept sticking on the ground…these are spasms and the Doctor prescribed me a muscle relaxant. I have to say the dose was massive and knocked me down for few days. Now I’m going to try smaller dose to see what happens…

    Tysabri has been ok. No physical improvement but a lot of energy.

    It seems that I can tolerate the heat better than before although I don’t want to risk it. My exercise timings are much better; I do over 2 hours of exercise a week. In March 2011 I was doing under 1 hr /week…

    5th infusion 18.05.2011 (written on 19.05.2011)

    I have been feeling the UK summer since April, which affected my MS in a big way. My balance has been very poor and I have fallen a few times. Now we are back to cold weather or not so hot and I feel better. Last month I didn’t see any improvement, only the energy which was excellent, specially the last week before Tysabri.

    I had my 5th Tysabri infusion but I had headache before the infusion and it got worse afterwards. I still managed to walk from the car to the infusion centre without stopping and in a rapid pace. I got back to the car with worse headache than before and tired, but I managed to walk.

    The heat came back and I am feeling it very bad.

    Update 4.5.2011
    I don’t feel any different in my 4th infusion other than being tired. My balance has gone worse (I think) hence I have fallen badly in the last few days, never mind…It seems that all this tiredness has a lot to do with the fatigue management. Possibly I do too much exercise, or I don’t do anything sometimes, the extremes are  not good. I need to plan an exercise program that does not affect me badly, eg.: decreasing the exercise time every day, being active everyday to avoid fatigue…

    4th infusion 21.04.2011

    Today is the day after my 4th infusion. I have headache but I decided to come to work as I think that the main reason for my headache is to be at home on my own. I took 2 paracetamols and I feel better. My energy is fantastic even though I got really tired yesterday after my walk (30min) from the car park to the hospital, and the heat (25 degress C), etc. My performance was not good, I kept stopping to get my energy back, but I got there eventually.

    My infusion went fine, nothing to report about that. Every time I’m back from the hospital, I have new hope that I will start walking better soon. For these few months I am trying to build up my muscles in my legs which I lost for being sitting down for too long. I made my own exercise plan which I am doing every day or almost every day. I am determined to get better soon as I am getting the help from Tysabri.

    Today I read the news and it says that for women, a pregnancy and the baby might not be affected by the Tysabri MS treatment. This makes me happy with hope to have a family of my own, with our own child.

    Update 1.4.2011

    Today is Friday and amazing the way I feel. I am a bit tired but I still have energy to do a lot of things. The changes have been mild but constant throughout the last two infusions. My energy levels have been consistently high enough to cope with daily routine. The balance is also improving but not as much as I would like to. I am still walking with the frame but sometimes I try not to use it at home. I have been increasing the number of times that I walk without help and it is now every day! If I don’t risk it, I don’t get what I am looking for… My fallings and getting ups are part of my learning process, to learn things that should and should not do, for the moment…

    Overall the symptoms have improved considerably.

    I’m getting my life back, now I am more able to enjoy things and have great moments. 

    I have realized over the last few weeks that my emotions and daily activities have a lot to do with the way I feel physically and the fatigue. If I’m happy and busy I will feel great… I need to be happy and at work all the time. It is crazy wanting to work all the time but this works for me. However, it could be bad for some people, I suppose. MSrs don’t feel the same. I am still finding out things that work for me so I can have a good life with my hubby.

    3rd Infusion 23.03.2011 (written on the 28.03.2011)

    3rd infusion went well; next few days with headache and bit dizzy on the 4th day. Today is Monday, I’m back to work and I feel tired. Maybe I had more than enough days off and I feel jelly now.

    My balance is improving although I’m still using the frame. I am feeling more confident when I walk and I am walking longer distance.

    When I went to have the infusion, I walked all the way from the car to neuro-day unit. I was surprised that before the infusion I was having energy to do that. Yesterday I went for a walk where I live even thought I was not feeling well after having strong headache and being sitting down the whole day.
    I did not have very good weekend because of headaches. However, I had really nice company (Jackie and Tony) who supported me and James by helping us with things at home and giving us a lovely company.

    Update 7.3.2011

    Today is Monday, first day of the week in the office. I thought that I was going to be wasted since I forced myself a lot in the shops on Saturday. I always wanted to walk rather than just sit down on the chair.  I decided to use the wheel chair as a support (like a walker) and I was walking throughout the shop. I must admit that it was difficult especially because the wheel chair does not have brakes on the handles like the walker. The wheel chair sometimes went too fast forwards and it was difficult to stop it. The other point was that I couldn’t put part of my weight on the handles because it went backwards. At the end, I did a lot of exercise with my balance and legs.

    I also spent some time using a motor scooter through another shop. It was fantastic with a lot of fun. I never thought it was going to be that enjoyable.

    On Sunday I was very tired and I rested the entire day.
     
    Today I feel good and with some energy. Slowly I am getting to know my capabilities so I plan a bit more for the future.

    My resting time is not as long as what I used to have before Tysabri.

    I noticed that I am not getting more swallowing problems and I am able to eat with more strength in my hands.

    The problems with my bowel have disappeared.

    It is important to understand that everyone’s MS is different…I really hope that MS people newly diagnosed or prompt to start using Tysabri find my experience helpful.

    2nd infusion – 23.02.2011 (written on 28.02.2011)

    The 2nd infusion was good, no side effects although I have had headache for 3 days after the infusion. However, I don’t think that it is due to the drug.

    Five days before the infusion I realized that my energy wasn’t like just after the infusion, and I found out with my nurse that the drug wears off and it is noticeable a few days before the infusion.

    It is mad all the energy that I get because of the infusion, it seems that it recharges my batteries… I am more able to do things at home and go out more. The fatigue is not like before Tysabri where I wasn’t able even to speak because I was breathless. The only problem is that I am not able to sleep at night; I need to find the best way to manage it.

    My walk is getting better, although I am still using the frame; sometimes I feel confident to walk without any help and I do it around my house for 10 minutes. There is no doubt that it is working, I just need to give it more time…I will see in a year’s time…

    My husband and I noticed that my mood is changing for good. I am not grumpy as much as I used to be as I feel more capable and am now able to do things at home (washing, cooking, tiding up, long showers... etc).

    Looking forward to my next infusion!

    1st infusion – 26.01.2011 (written on 07.02.2011)

    The infusion went fine. No side effects at all.

    Next day I felt full of energy but I thought that was because of being sitting down for so many hours for my infusion. All these days I haven’t been able to sleep at night and then I understood that was Tysabri giving me energy.
    No problems with going to the toilet anymore.

    The week after Tysabri infusion, I managed to work four days in a row for 8 hours each day. I have energy to do it. However, the fourth day I was already tired. The evening of the forth day surprisingly I was able to walk without my walker around the house for about 20min.

    I am looking forward to my second infusion on the 23th February.

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