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I'm 40 and live in the UK. I have been diagnosed with Relapsing Remitting MS since March 2007, and in that relatively short time I've gone from ordinary levels of activity, having no idea I had MS, and managing a fairly physical full time job to the difficulties and disabilities I find myself with now. That is: I have a very weak right side, a significant limp, and a dropped right foot. I can't use my right hand, so not able to write, cook etc.,although it is much better than it has been. I have the ability to grip, and that helps with "furniture walking" indoors, and using 2 elbow crutches outdoors. Sometimes I need a wheelchair but I try to manage without. The difficulties with mobility have become very much worse in the past year. I need assistance with activities of living every day, but am, luckily, managing many things myself. I have other symptoms that'll be familiar to most people reading, such as bad fatigue, a very annoying coarse tremor, during 1 of the many relapses there has been optic neuritis and, separately, double vision. The weight loss has become more than I want!
I have no children, and used to think it was something I'll do later. Now I feel too unwell. That's been a lesson to learn.
As for medication: I tried Avonex, but found the side effects difficult and didn't persevere, I didn't know how much I had to. I had a great result with Copaxone, it helped me to become more able with the right hand while waiting for Tysabri. I used it for 4 months and although I have been pleased with the results I found the injections painful. Maybe not enough subcutaneous tissue(?). Now I'm waiting to start Tysabri this month. I'm so pleased to have this opportunity. I hope it goes well. I'll let you know! Susan
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Update 24/06/10
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Hi All
I realise I've not updated this for a while but I'm pretty stable and don't have much to say for myself!
I still haven't had a relapse so that's very good news and I'm not much worse. Apparently some of my symptoms were already secondary progressive when I started Tysabri, and they are the things that do get worse. I'm now treated with Propanalol for the tremor which does calm down a bit with that drug. That for me has been well worth taking. My balance does get worse and causes worry to me and to others but I don't know about anything that might help. Does anyone else? Please let me know if you do :-).
Fatigue wipes me out and I'm sure I could manage it better but I'm too tired! That's my excuse for now.
I've been and remain mostly low in my mood. That I put down to being a normal reaction to the many losses. Enough said!
I still promote Tysabri and believe it's been a great help to me. I wish I'd been more inclined to take the available drugs earlier. Maybe we're getting luckier now, lets hope so!
Take care
Susan x |
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10th Infusion
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Hi All
I've had 10 infusions now and still relapse-free. It seems to become easier everytime and time passes so quickly! However my presentation is no different, and I haven't had any side effects. It's a good thing that I'm no worse, but it's unfortunate that I'm no better.
I wish I had more to say, but that's as good as it gets (so far!)
Take care
Susan x |
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7th infusion
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I have had the 7th infusion without any problems again. I still haven't had a relapse, and I do think there is some improvement in my presentation!
I'm managing to drive more easily than I was and find I'm even enjoying it again. My car is adapted with a left foot accelerator and I thought my right foot and leg were my biggest problems, but then I found my steering was a problem! That was unexpected but over the past couple of months my arms have felt a bit less tight and more functional when driving. That's a relief and I'm definately better at driving than walking. I don't go too far but can manage 15-20 miles without too much problem.
The balance has probably got better at times too. I still use 2 elbow crutches outside but indoors I can walk a few metres without holding onto furniture or walls. It doesn't sound much, but it's a positve change for me and I put that down to the Tysabri. I only wish I'd started it before I became so disabled. My speed at walking with the elbow crutches is defintely better and I'm not losing anymore weight. The fatigue is less frequent.
There are no new symptoms but the tremor is pretty bad probably because of the stress of the major life-changing events I'm going through. They can't be avoided and would be difficult even if MS wasn't an issue. I'm getting through those and apparently "look well". I'm not relapsing and have to remind myself about PML because I do tend to forget about it.
What else can I tell you? I'm going to try "voice recognition software" later today because writing is still not possible and typing's not easy. I'm presuming it'll be a benefit. Oh, and I still recommend Tysabri!
Do take care, and be in touch if you want to ( susanmcd68@live.co.uk). It's nice to hear from you :)
Susan xx |
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5th and 6th Infusions
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Hi All
Already I've had 6 Tysabri infusions. It seems very quick and I apologise for not writing sooner. I got a bit too sorry for myself last month, but this month I'm more back to normal, mentally at least!
I wish I had something more interesting to say, but I'm happily staying the same with no relapses, even through having a cold!
Sometimes I think the function of my right hand is better; sometimes my balance is briefly better; sometimes my energy feels a little better, but mostly I don't change and I guess I should be pleased about that. I have in my mind that a year might be a turning point for the better, but don't ask where I got that idea! I might have made it up! I need to hope I don't get worse, and I still feel lucky to be able to have Tysabri. That does mean a lot .
Do take care
All the best
Susan x
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4th Tysabri Infusion
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| Hello All Hope all are well. I had the 4th infusion with no bother. Everything went smoothly and I remain stable with some improvement in the level of tremor I'm having. I think the improvement is more to do with reducing the stress than it is to do with the Tysabri, although that is apparently what is helping to keep me stable without any relapses. I was pleased to find out that MSIF have produced an issue of its magazine "MS in focus" called "Tremor and ataxia in MS". I found it somewhat comforting to know that this is a fairly common problem. I emailed to info@msif.org and requested a copy of issue 13. They very kindly sent it very quickly to me. This is a worldwide organisation that I was unaware of. Future copies of the magazine and information about their work is available online: www.msif.org. I'm sure I'm not the only one who'll find it of interest. I'd like to give my email address to anyone who may be interested: susanmcd68@live.co.uk. Do be intouch if you feel like it. MS can be an isolating illness I find, although I hope to improve that situation over the next weeks. I have plenty of time now! Anyway take care Susan x |
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3rd Tysabri infusion
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Hi all
I've had the 3rd infusion without any bother. It all seemed to go smoothly and I've had no adverse reactions so far.
I was a bit too pleased about my presentation last time, and it didn't last long. After a couple of days more I tremored and was fatigued more than I'd like to think about. It does continue, and if anything the tremor's much worse: affecting my whole body. I'd say the balance and mobility are worse too, definitely the balance, and also the function of the right hand. I don't think I'm relapsing as there are no new symptoms but the existing ones are difficult to bear. I think it's all down to stress which has been in abundance.
The Tysabri's doing it's job I think. I still have faith in it and hope I'll have a better report next time. Needless to say, I'm sorry for myself and won't go on about it, although it's tempting!
Take care
Susan x |
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2nd Tysabri Infusion
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Hi, I've had the 2nd infusion without any adverse effects.
The bloods and infusion went efficiently and easily again. I've suffered no relapses and, if anything, I have to say I may be a bit better!
The last month has been good for me. The tremor seems no longer to be constant, and mostly hasn't been as disabling as it was. The use of my right hand has been better, and although anyone else might think it was rubbish, I find I can type more easily; have held a fork or spoon in that hand and managed to eat with it a bit; I even picked up a beaker with that hand and although I knew something wasn't quite right I didn't immediately know what it was. The fatigue hasn't been as bad as before and it may be true to say it hasn't even been daily.
I remain skinny; and weak; my writing isn't worth seeing; and my mobility remains very poor but overall things are looking up for the first time in a while. If anyone is thinking of receiving Tysabri I can only recommend it!
Take care
Susan x |
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1st Infusion 26th February 2009
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I had the first infusion yesterday. I've been anxious for it to happen, and all went well. I am happy that I got through my 6 weeks without any medications with no relapse. At the moment that feels good in itself.
The infusion and blood tests all appeared to go routinely, and I feel no different so far. I'm obviously hoping for improvements in the longer term, but if I can remain the same I think I'll be satisfied to put a stop to the quick worsening of my abilities.
So nothing much to report so far, but I'll keep you posted.
Take care,
Susan x
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