Multiple Sclerosis Resource Centre
  • Home
  • About MS
  • MSRC Services
  • Get Involved
  • MS Research News
  • MSRC Groups
  • Useful Resources
  • Welcome To Josephs Court, MS Centre Of Excellence
  • Advertising
  • E-Newsletter
  • Contact Us
  • Cookie Policy
  • Investor in People
    You are here : Home » Get Involved » MSRC Interactive » Tysabri® User Diaries » Michelle's Tysabri Diary

    Michelle's Tysabri Diary

    A A A
    [Print this page]

    Share |


    Hi all.

    I'm Michelle and I'm 35. I was diagnosed with RRMS in July 2005. Up to my diagnosis I had a few things happen to me and didn't at all link them to MS.

    It started off with loosing vision in my right eye. Sadly I've always had poor vision in my right eye after an operation as a child. So I more or less went nearly blind before I even noticed a problem! I also had some heavy feeling to my right arm and a persistent headache that wouldn't go away, even after taking paracetamol. I didn't normally suffer with headaches but thought nothing much to it as I was going through a move of house at the time and thought I was maybe suffering with Migraine or something. I went to the local hospital who sent me to another hospital to see an Opthalmologist (eye doctor). There they told me that the problem may be due to a brain tumour, but as I had 'other signs' (heavy right arm) then I needed to have an MRI scan. No mention of MS at all.

    I just 'plodded on', kept having banging headaches and even phoned some of my friends who suffered with Migraine's to see if they felt the same! Sad really considering I'm a nurse!

    Then one morning I woke up and my right side of my body felt really heavy, (arm and leg). I just thought I'd slept funny and it would feel better as the day went on. I went to work at the hospital and one of my friends noticed I was 'limping' a bit and not my usual bubbly self. I told her about my heavy right side and banging headaches. Me been me thought it would all be ok and get better as the day went on.

    To cut a long story short, my friend spoke to one of the Dr's in work, who spoke to the consultant, who told me to go visit my GP and get them to refer me to him. So I did. The consultant fitted me in very quick when he got the GP referal (the only advantage to working in the NHS). And I saw the consultant within days. This was the first time MS was mentioned. He then arranged for me to have an MRI scan the following week, and I saw him the same day with my MRI results. This was when the MS was diagnosed.

    Previous Disease Modifying Drugs: Copaxone, March 2006-June 2007, Rebif July 2007-February 2008

    Other Medications:  Baclofen, Calcichew, Amitriptylline, Betahistine

    Sadly the other DMD's didn't work, and I continued to relapse every 3 months or so. I've lost count of the number of IV steroids (Methyprednisolone) I've had. I've had 2 hospital admissions due to my MS relapses but the majority of my IV steroid infusions have been given as an out patient. Things on the MS front have sadly gone from bad to worse and my neurologist has said I have aggressive RRMS. Therefore for me Tysabri was a final chance, and it was one I was going to grab with both hands.

    Symptoms/Problems pre Tysabri

    *  Immobile

    *  Bedridden most of the time

    *  Intermittent blurred vision

    *  Altered sensation/feeling from below chest down to toes

    MS Hug

    *  Bladder/Bowel urgency. No feeling when needing to 'go to toilet'. Often only felt the need to go when it was 'on its way'.

    *  Using commode at side of bed. Struggle to get in/out of bed to use commode. Difficulty balancing/standing when 'cleaning oneself up'.

    *  Unaware of positioning of feet

    *  Right leg more heavy/dead than left leg. Cannot move Right leg independently. Need to lift it back into bed, and need to manually move it to change it's position when in bed

    *  Reduced sensation/feeling in both arms, down to finger tips

    *  Unable to access bath. Have carers in twice daily to help with assisted wash in bathroom on a morning. And again on an evening to assist in personal care.

    *  Foot drop

    *  Difficulty getting comfy in bed and changing position in bed when lying down

    *  Was a touch depressed (surprise surprise!), as well as anxious and emotional. These will be hard to assess/review as only very recently my mum died so am currently going through a whole world of emotions.

    Just one more thing. A word of warning! With my mobility been so poor, and getting out of bed been a huge struggle. I did the worst thing I could have done. I more or less stopped drinking, as then I didn't have to struggle out of bed to have a pee. So I got a Urinary Tract Infection (UTI) and had to be treated with antibiotics. So my original appointment for the Tysabri had to be cancelled and get delayed until I produced a 'clear' sample of urine. Needless to say I learn't my lesson, and won't be so silly again.

    I also feel I need to say the thought of the PML didn't come into my mind once. As far am I'm concerned, everything has it's risks. And for me, the Tysabri was a final chance with the other DMD's not working.

    Tysabri Update-Infusion Number 50!!!

    Hi all. Firstly a HUGE apology due to my lack of updates. Things have been pretty hectic in my life, on a personal family kind of way. Thought an update was long overdue as I'm having Infusion Number 50 tomorrow. Quite a milestone really.

    It's 4 years in March since I started my Tysabri infusions, and it's fair to say that I would do it all again tomorrow should I have to. I STILL REMAIN RELAPSE FREE!!! Yet, I'm still touching wood when I type that!!

    I've looked back at my very first entry almost 4 years ago, and it is fair to say that things are very very different compared to then. In fact the only problem that remains with me is that I do have a few 'bladder' incidents, but this happens very rarely, thankfully!! I also do get tired at times, but I do tend to keep myself busy and occupied, so I don't help myself in some ways...

    I still have my bloods done pre infusion, but I have never had a problem with any forms of infection. I continue to be reviewed by the Neurologist and have regular MRI scans, but thankfully nothing 'bad' has happened. I am expecting to hear about the new JC blood test soon, as a few of my friends have had this discussed with them at recent visits to the Neurologist. As soon as I have any more information about then then I'll update again. Hopefully sooner than last time :-/

    One thing that has recently happened to me is that I have started doing some work again too. Only 'part time', but it's enough for now. I have been one of the 'chosen few' who got called in to review my DLA/IB claim, and as I'm 'cured' I am no longer entitled to any form of benefit, it's a good job that I am attempting to work! And I do hope that it doesn't cause me any problems relating to 'relapses'. At least no-one can say I have not tried. It is a bit frustrating to be honest as I did not get 'Medically retired' from the NHS for fun, but there you go. You've got to love our wonderful country at times!!

    On the positive side, I'm back on the bike, literally!!! Having lots of fun back on 2 wheels. Busy planning holidays and just making the best of what I consider to be my second chance of a life. Tysabri has given my something that I thought was never possible. And like I said earlier, I'd do it all again tomorrow....

    Hope to find everyone else well?!? I'll update again mid year, unless something happens...

    Take care all.

    Shell xx

    Recent Tysabri update 23/07/10

    Hi all. Well it's been a while since I last updated, so thought I'd best crack on and do one. I thankfully have got nothing bad to report. Life is going pretty well to be honest and most importantly I'M STILL RELAPSE FREE!!!!

    I'm obviously so pleased with the life that I've had given back to me as a result of having the infusion. For me, going into hospital once every 28 days is a very small price to pay to be able to do so much more. I've now had 31 infusions in total.

    I'm managing to ride my motorbike, go on holiday and have a life again!!! I've also just recently applied to become a bank nurse. Something, which not so long ago only seemed to be like a dream for me. Now it's a reality!

    I've also met another one of the people who do a diary on here (Sarah P), as she attends the same hospital as me for the Tysabri infusion. We've been having the infusions together for a good 6 months, but we've finally been split up!! I think we were too noisy to be putting together, haha. It just goes to show that the people on here, who do the diaries are REAL PEOPLE!!  I'll miss Sar and her endless supply of jelly sweets...

    So all good. No complaints. I'd do it all again tomorrow if I had to choose. I've also got a routine MRI scan next week. So that will prove to be very interesting as I'm in such a better place than I was 3 years ago when I had my last one. I'll update when I have any information about that one.

    Take care all, keep smiling :-)

    Shell x

    Latest Tysabri Update (October 09)
    Infusion No 21 Tomorrow 09/10/09

    Well it's been a while since my last update, so I thought I'd better get my finger out and get an update sorted. I cannot believe that it's infusion No 21 tomorrow! How things have changed for me over the past year and a half.

    I am still relapse free!! An amazing result for myself, as neither of the other 2 DMD's I tried did anything to reduce the number or frequency of relapses which I had. I can say for sure, 100%, that this is the longest I have ever gone in my MS history without having a relapse! I still knacker myself out by trying to do too much at once. I think a small part of me does still worry about what tomorrow will bring, although it's nothing like I was at the beginning of my Tysabri journey.

    I did become a little concerned as a 'friend' told me that if you were on Tysabri and had not relapsed for over a year ,then the consultant may well decide to stop the infusion as it's an expensive treatment to keep on having if you don't really need it. Needless to say hearing that worried me lots... So when I last saw my consultant I asked him if this was true. He assured me that this was not the case, (thankfully!). He told me that although we are still not sure what the long term effects of taking the infusion are, it's obviously working for me, so why stop it. He assured me that it would not actually be 'cost effective' to stop the treatment as should I relapse then that would mean IV steroids, physiotherapy, home care etc. Which would cost a lot more than the infusion takes every month...

    Thankfully that settled my worried mind as I would not like to think what would happen should my Tysabri infusion stop. I know that none of us know the long term effects of the treatment, although for myself I'm quite happy taking the risk as I do have a bit of my life back.

    I now feel more confident planning things for the future, booking holidays, planning nights out etc. Something which I had huge problems doing before as I never knew what the next day would bring.

    I have been officially retired from the NHS. Something that was (and still) is, really hard for me to get my head round. I do still think sometimes that I could do my old job. In reality I think maybe I do tend to get ambition a bit mixed up with ability... I was actually very dissapointed by the retirement package that I got from the NHS. I'd have thought that due to the nature of my retirement, (our old friend MS), that I'd have automatically been accepted for the better financial package from them. As we all know that we are not going to wake up tomorrow and realise that it was all a bad dream. But no, I didn't. Rather dissapointing really. Although I'm assured that my claim will be re-assessed at some point, but I won't hold my breath...

    Well thats all from me for now. I'll update again in the next 2-3 months. And who knows, that could be from an exotic place if I get my pension sorted... Take care all.

    Shell x

    Latest Tysabri Update 21/05/09
    Next infusion tomorrow 22/05/09

    Hi all. This is a really short and sweet update following my last infusion. STILL RELAPSE FREE!!! It's now over a year since I've had to have any IV steroids for any relapses which is brilliant for me.

    Still mobile with my walking stick. Still driving my car. And have even had a little try riding my hubby's motorbike too, which went rather well as it's over 2 years since I've ridden myself. I've also been able to get back onto the normal pushbike which was brill. I was a little wobbly and getting started and stopping was interesting, but at least I did it! Yet again something else which a year ago I didn't think would be possible.

    I'm also now booking things to do in the future. Yet again something else which I was too scared to do a year or so ago, as I felt a relapse was only just around the corner to catch me and bite me on the bum. Now I feel much more positive about booking things in advance as I feel the Tysabri has given me a chance to book things and make plans. All good for me.

    Well thats all for now, I'll update again in 2 more months. And who knows what I'll be able to do next time... Watch this space.

    Take care all, Shell x

    Latest Tysabri Update 27/03/09
    Next infusion tomorrow 27-03-09

    Another good month or so for myself. Most importantly I've remained relapse free, which is a whole new thing for me. With my MS been so active before it does still take some getting used to. I still wake up on a morning thinking I'll not be able to move my legs again. Although thankfully I can. Still mobile with my stick most of the time when out of the house. But I do try to mange my best around the home stick free. I do get tired days, but nothing like the fatigue I used to experience with previous relapses.

    I've still not heard anything about my 'ill health retirement' from the NHS. I guess these things take time. I have been meeting other people with MS, some whom are getting the Tysabri infusion at the same time as myself. It's priceless to be able to talk with other's who know exactly how you're feeling, what you're experiencing etc. I know our loved ones and family do their best to understand, but someone who has the same problem as you knows what you mean.

    For the first time in ages I feel much more comfortable with planning things for the future. Before I would not dare plan anything, as I always knew a relapse was round the corner. Now I feel happier planning things for the summer, days out etc, as hopefully the damn relapses will stay away for a bit longer yet. Feeling this way is also keeping my in a much improved mood as I have things to look forward to.

    I'm still helping in the local charity shop for half a day a week. That helps me feel a bit more 'useful', and not so useless.

    Yet another good month to report. Will look forward to reporting on the next one.

    Take care all, Shell x

    1st Tysabri Infusion (15/03/08) - One month after

    Next infusion tomorrow 16-04-08

    Well what a difference a month makes. I of all people found myself telling everyone, ''..It's going to take a while, I don't think there will be a difference in one month, I'll probably need a few infusions before I even notice a slight difference....". So I still am questioning, is it the Tysabri?? or have I just got used to doing things different and adapting to my life now? I guess time will tell. I'm just looking forward to number 2, and still keeping everything crossed and hoping that whatever change happens, no matter how small, I'll be more than great full.

    During and after my infusion I had no side effects, no queer feelings. Everything has been fine. I get my bloods checked (via the district nurse) pre each infusion. So far so good.

    I am now mobile with a zimmer frame, and can even manage a few steps with elbow crutches. This has enabled me to get out to the car, without it been a military procession operation like before for my 1st Tysabri infusion. So I've been out for a couple of Sunday lunches with my family in my wheelchair. And have even managed to get into the pub using my elbow crutches, no wheelchair needed! This is a minor miracle for me, and am so pleased. I feel like I've been given another bite of the cherry.

    I can manage to go up the stairs using the grab-rails, one step at a time. I'm shuffling downstairs on my bum, but at least I'm not confined to the bedroom anymore!

    Increased 'patches' of feeling to both legs, feels like hot patches in places. More movement in Right leg. Can now move it around without needing to lift in and out of bed. Leg also stronger. It often felt before like my leg wanted to bed the wrong way. This would make me unstable and wobbly when standing. Much more stable when standing now.

    More feeling when need to go to toilet. Reduced number of 'accidents', as before often felt I needed to go when it was 'on it's way'

    Using 'proper' toilet, getting there with zimmer when upstairs. Do have commode downstairs to use if needed and if I feel I cannot make it in time upstairs.

    Have been provided with a bath hoist!!! This is more than brilliant. I can now use this to bath myself. Walk into the bathroom with my zimmer frame, then go back to the bedroom with my zimmer and put my PJ's on.

    Footdrop-gone. Guess this is as I'm spending more time out of bed and more 'mobile' with my zimmer frame. I'm also more aware of the positioning of my feet, and can now tell which way they are facing. Before I had to look to check they were still there!

    My carers have now been reduced to once a day, on a morning. This is as I'm more independant on an evening with my bath hoist.

    Like I said before, is this Tysabri or have I just got used to a different way of living. Sadly I'm still a bit afraid to think things could be getting a little better. As knowing my luck I'll wake up in the morning and it'll be back to square one! Things have been very tough recently, not just for me but the whole family. Lets just hope something good is happening our way, just for once!

    Will post again a month after infusion 2. I found reading others diarys a huge help when I knew I was going to start the Tysabri journey. I hope mine helps others too.

    Take care,

    Shell x

    2nd Tysabri infusion (16/04/08) - One months after

    Next infusion tomorrow 14/04/08

    Well thankfully, things are still 'on the up'. Only small improvements in some ways, but I'm so pleased they are improvements and not worse problems. Think I still worry another relapse could well be 'in the post' as previously they happened far too often. And thinking about it my last relapse started the end of last year and then peaked in March this year. Will have to see what will happen in the next month or so, as sadly I'll be about due another, but we will see!

    Thankfully still have had no side effects from the Tysabri (touch wood!). My bloods have all been ok ish, CRP was raised but it would be with having a relapse, so nothing to worry about really.

    My mobility is still improving slowly. I have a good system going with, the zimmer frame (for when I get up first thing in the morning -  don't do mornings!). The elbow crutches (for walking to the car, and any distance I can manage). Then even the walking stick! (for pottering around the house where I know there is a trusty wall to grab should I need it!). So I'm very pleased with that.

    I'm now walking up and down the stairs, each step in turn, like 'normal'. I use the grab rail and banister for support. No more sliding down on my bum!

    Both legs also getting stronger, have some exercises to do from the Physio to build them up, so do them twice daily. Right leg now no longer feeling it wants to 'bend the wrong way', feels more stable and sturdy.

    Not used commode downstairs for a bit. Can now feel when I need to go to the toilet, and make it in time going upstairs! Wow!

    Still getting the carer once a day on a morning. This fantastic service is due to come to an end and myself and my family cannot praise them enough. They have been fantastic. I've now started to try to walk to the bathroom with my zimmer frame, and clean my teeth etc standing up. I still have the glideabout chair handy should I need to sit down, but the need to sit is now reducing.

    Still have some reduced sensations in my arms, to my finger tips, and both my legs. Can manage with that at the moment, and it could still improve.

    I know that the Tysabri cannot 'fix' the damage that has already been done as a result of my previous relapses. And I'd be more than happy if things stayed the way they are now. I'm no longer bedridden, can get downstairs, get to the car and use a proper toilet!! I'm just hoping that it keeps the relapses away for a bit longer than before!

    Also a quick 'HI' to the people I've recently spoken to on the phone to let them know what Tysabri has done for me. My MS nurse asked me if I'd speak to them, and I didn't mind at all! I've pointed them to this web site as I found the diary's really helpfully when I was waiting to start it myself. And it's a good source of information for them too.

    Take care all

    Shell x

    3rd Tysabri Infusion 14/05/08 - One month after

    Next infusion 11/06/08

    Again, things are still going the right way at the moment. More importantly NO RELAPSE so far! Thats very good for me, as I used to relapse every 3 months or so even on the other DMD's. Will probably regret saying that now, but gotta take each day as it comes.

    Still no side effects from the Tysabri, and my monthly  bloods all seem to be doing OK, apart from the raised CRP still. Must remember to ask tomorrow if it's getting better!

    Mobility still seems to be the thing that I'm finding the greatest improvement in. I last used my elbow crutches to walk to my appointment for my Tysabri infusion, and have been using the walking stick since. I've managed to even walk a few steps around the house without any aids! This is amazing considering 4 months ago I was bedbound and struggled to get out of bed to use the commode! Also, my husband sprayed my elbow crutches 'metallic purple', haha. I'm sure the NHS will be thrilled when (or if) they get them back! With the mobility improved I can now do more in the way of getting out. I've been to a night 'do' for a wedding, met friends for meals and gone out more with my family. This is more than fantastic, and I'm now doing anything I get chance to do, when I get the chance to do it.

    Also the bladder and bowel control continues to be good. It's brill knowing when I need to go now. I'm still using an small inco pad daily, but think thats just for peace of mind.

    My care team have also now stopped coming in a morning! Again another big step as I can now manage myself. They were all brilliant each and every one of them. I did enquire if I had another relapse would they be able to kick in again if needed, and they can which is great to know. Guess I'm still worried another relapse could well be round the corner!

    All things considered, it's very positive. Fingers, toes, arms and legs crossed it stays that way for just a little bit longer.

    Take care all,

    Shell x

    4th Tysabri Infusion 11/06/08 - One month after

    Next Infusion 09/07/08

    Firstly, I'm still relapse free!!!! Wow. Thats outstanding for me I have to say. I still wake up on a morning expecting something to have gone wrong. Sad I know, but thats how I feel. Every morning is such a huge bonus to be able to wake up, get out of bed and slowly make my way to the toilet. I'm easily pleased!

    Still getting the monthly bloods taken and so far so good. Although last month I did have a bit of a panic with my regular urine sample I provide before I get my infusion. I normally have about 2 pints of diluted orange juice before I head to the hospital, but was running a bit late and only had 1 cup of coffee (Doh!). So I get's to the hospital, provide my sample, and it's got leukocytes in it!!!! All my own fault, and I should have learnt from last time when I had my first infusion cancelled due to a urine infection. So I had to drink a litre of water, then give another sample for it to test clear before I could get my Tysabri. Thankfully it came back ok (phew). So tomorrow morning I'm drinking loads of water before I get to the hospital....

    Have had an unbeleivable month. I've done things I NEVER thought I'd get chance or be able to do again. I'm still 'grabbing everything while I can', and making up for lost time.

    Started off by going to see the Amir Khan fight in Birmingham. Disabled car parking was excellent, fight was excellent, and our seats (5 rows off the ringside) were excellent! Sat nav finding the place in the center of Birmingham wasn't good, it kept loosing the signal with the tunnels in the city center! But we got there in the end.

    Next day, on the Sunday, we went to the Moto GP at Donington Park. Disabled car parking was again excellent (I've put a posting about this on the message boards). My husband and I had booked start/finish grandstand tickets, as we wanted it to be special, and we both were aware that I needed a safe place to sit down as I was going with my stick and no wheelchair! The grandstand was at the other side of the track from the disabled car parking at 'starkys', we knew this when we booked but I just HAD to do it! OK, it might have taken me at least 2 hours to walk round, BUT I DID IT!! And I was quite tame and controlled with my 'big gob' too. I only threatened to wrap my stick around the next persons neck that knocks it out of my hand only once! So that's good for me according to my husband, hahaha.

    Then on Monday, the ultimate! My '2 years better late than never honeymoon!'. We flew to Italy for 6 days. BA who we flew with were very good. Hotel was stunning, and Italy was lovely. I did notice the heat did definitley slow me down a lot though. We took the walking very slowly, had lots of rests, and had a totally fantastic time.

    Think I shed a few tears at every single thing we did. I NEVER though I'd be able to do these things again at the beginning of the year. I thought I was finished! I wanted to put on my posting what I'd done, not to boast or brag, but to show others who might be having a bad time of it at the moment that there is light at the end of the tunnel. I remember reading someone else's diary who'd been on an exotic holiday and I thought 'if only....', and here I am.

    Finally a HUGE thanks to my hubby. He's been a rock and a total star. And I know he'll be reading this......Love you x x x

    Take care all

    Shell x

    5th Tysabri infusion 09/07/08 - One month after

    Next infusion 06/08/08

    Still relapse free!!!!!!!!! Thats more than brill for me. I'm still going to bed on a night wondering what the next morning will bring for me. Think that's going to just be me really.

    Had the monthly bloods taken 2 days ago at my GP's surgery. Still going ok, so far! I did see the consultant a couple of weeks ago, and asked him how my CRP was doing. He assures me that it's now getting 'back to normal', so thats good. I'm hoping it stays that way. If it settles down then it will assure me even more that the relapses are keeping away for now.

    I've had a much calmer month than the one before. No exciting trips to Italy to report this time. Athough I have driven my car which is just as exciting for me. Not done that for a long time.

    Anyways, short and sweet this month.

    Take care all.

    Shell x

    6th Tysabri infusion 06/08/08 - One month after - Next infusion tomorrow, 03/09/08
    Hi all. I apologise now for a very 'short and sweet' update. I'm in the middle of moving into a bungalow with my hubby and still awaiting my internet to get sorted.

    Another good month for me. Still no relapse!!! I cannot remember going this long without having to have IV steroids since my diagnosis 3 and a bit years ago!!! I last had IV steroids in January this year. This is a record for me. (She says grabbing onto the wooden table as I type).

    Mobility still doing good. I'm managing to walk around a little more without the stick. I think it's a confidence thing when I go outside as I do take it with me then. I'm getting there, so I'm happy. If this is the best it gets then I'll be more than happy. I've come a long way from been bedridden and incontinent at the beginning of the year...

    Well thats all for now. May do a more detailed update when I get reconnected in the next day or so.

    Take care all, big hugs.

    Shell x

    7th Tysabri update 03/09/08 - One month after
    Next infusion tomorrow 01/10/08

    Well gotta say, another good month for me. STILL RELAPSE FREE!!! That's the most important thing. Cannot remember when I last went this long without needing IV steroids. Probably because I've never been this long since diagnosis without needing steroids!

    I'm going to look back at my initial problems 6 months or so ago, and compare them to how things are now with me.

    Immobile was a huge problem then, I'm now mobile with the aid of a walking stick, this has improved greatly. I've gone from immobile, to mobile with zimmer frame, then elbow crutches, now a walking stick. That's brill. And I even 'potter' around at times around home without any aids or anything. Very pleased with that.

    I was also 'bedridden' most of the time. I'd yet again had a monster relapse in Feb/March this year and that really knocked me for 6! Needless to say, this is not an issue anymore, thankfully.

    Blurred vision has also gone, my vision has been fine for a while now which is also a massive plus point.

    The MS hug and altered sensations are also a thing of the past. The hug was one of the first things I noticed changing. Good thing that's now no longer an issue too. I don't now have the altered sensations as such. I do find I've got very sensitive feet, and if anyone knocks them or stands on them then I let them know it! Not a huge problem, it's something I can deal with. My foot drop has also totally gone.

    The bladder/ bowel problems have also passed. Now i'm in control of when I do my stuff! I do still tend to use an inco pad, this is more for piece of mind I feel. The need to use the commode has also passed thankfully. Another problem to cross off the list. Living in a bungalow now is also making things much easier. I don't miss the stairs one bit!

    My right leg is now no longer heavy or dead thankfully. I've got good use of both my legs. I wouldn't say they are yet upto full strength, but they are certainly getting there thats for sure. I'm also now fully aware of the positioning of my feet. I no longer need to look down to see which way they are pointing, another good thing.

    I also now use a normal shower instead of the bath lift. I've got a grab handle in the shower, and a good non slip mat, but it's great to be able to use the shower 'normally'. With my right knee no longer wanting to 'bend the other way', it's now much safer standing in the shower. Again something I didn't see myself doing 6 months ago!

    On the depression front I feel I'm doing ok. This was a hard one to judge with loosing my mum so suddenly in February, my emotions were bound to be all over the place. I am still taking some anti depressants, and will continue to do so for a while longer. Looking back I was sadly very down at the end of last year. And in typical 'shell style' I tried to plod on and wouldn't acknowledge I had a problem. Thankfully, all things considered I feel I'm doing good on this front. The sad thing I'm dealing with at present is 'ill health retirement' from a job I more than loved. Getting retired at the grand old age of 36 is taking some getting my head round.

    I'm also now loving driving my car, spending some time away, and doing lots of things I couldn't do 6 months ago. I'm constantly getting told to 'slow down, and take it easy', yet I feel I want to do anything and everything I can, while I can. You don't realise how much you miss doing things until all that is taken away from you. So I WILL carry on doing what I can, when I can!! Live today like it's your last is my moto...

    Take care all,

    Shell x

    8th Tysabri update - One month after
    Next infusion tomorrow 25-11-08

    Hi all. I seem to have reached a 'stable' phase of my MS journey so far (touch wood!), I'm just hoping it stays that way for a while. STILL RELAPSE FREE!!! Which is still excellent for me. I've never gone this far before since diagnosis without having a relapse or IV steroids. I have noticed over the last couple of days I'm feeling a bit more tired than I usually do. Maybe I'm doing too much sometimes, I just don't want to stop doing things while I can...

    Mobility is still 'plodding on'. I've been using my trusty stick as ever, and it helps with this damp, wet, cold and slippery weather! I've also got some ace gripper type things to put on the bottom of my shoes when I go out when its icy or snowing, they are a great help. I'm also still driving my car fine and managing to do very well around the home too. I've also started volunteering in a local charity shop for an afternoon a week. It's brill to be able to get out and help others, and it stops me feeling so useless! I've also now finally completed and returned my forms for my 'ill health retirement'. That was very hard to do, but it's sorted now at last.

    Well thats all to report this time, short and sweet, and still positive.

    Take care all,

    Shell x

    Latest Tysabri Update 29/01/09
    Next infusion tomorrow 30-01-09

    Well it's been a couple of months since my last update. I've now decided to do my updates every other month as my MS seems to have reached quite a stable phase for once (thankfully). I get my 12th infusion tomorrow and in some ways the time has flown by, yet in other ways it seems to have been a long sad year.

    On the positive side though, I'm still relapse free!!! This is the longest i've been since my MS diagnosis without a relapse, and the longest i've been without IV steroids. All good! My last infusion which was due on Xmas Eve was cancelled due to a raised WCC (White Cell Count). As we all know, the medical staff are very very keen on making sure that bloods, urine sample are all clear before you get your next infusion. And that time things were a little wrong. I'd had the cough/cold that was doing the rounds and I thought I'd got well over it, but obviously not so. Therefore my infusion was cancelled on that day, I had my bloods repeated and thankfully they all came back fine, so my infusion was rebooked on 2nd Jan 09. Great start to the new year!

    Yet sadly i've got another cough/cold thing, so i'm not sure if i'll get the infusion tomorrow. I'll just have to wait and see. I fully understand how they have to be carefull with 'infections' etc, so if it don't happen tomorrow then it's just not meant to be.

    I've been busy myself. Still volunteering in the local charity shop which I love. It makes me not feel so useless, which is brill. I like helping other people out, and this is a great way of getting my confidence back too. On the sad side, I've had my contract terminated from work due to ill health. And now my 'ill health retirement' is now fully underway.

    All other things relating to my MS are doing ok. Mobility still ok (with my trusty stick). Bladder and bowels behaving. Sensory loss bearable. Think thats probably something i've just learned to live with really.

    I've also been asked by my MS nurse to phone a few people who are considering Tysabri. I've made it very clear to them all that we are all different, and just because it's worked for me it may not be the same for them. But good luck to them all if they do try it. I've also pointed them in the direction of the MSRC website and told them about the chat's and Tysabri user diary's. So if any of you are reading this, 'I told you it was a good site, and very informative'... Good luck to you all x

    Well all, thats it for now. Will update in March unless anything happens before then good or bad. Take care all,

    Shell x

    Related Items
    Ade's Tysabri Diary
    Amy Kristine's Tysabri Diary
    Annaoc's Tysabri Diary
    Cheryl's Tysabri Diary
    Chris Dawson's Tysabri Diary
    Christine B's Tysabri Diary
    Christine's Tysabri Diary
    Claire's Tysabri Diary
    Dave Parker
    David's Tysabri Diary
    Deborah Penny's Tysabri Diary
    Diane's Tysabri Diary
    Donna T's Tysabri Diary
    Eddie Clark's Tysabri Diary
    Emma's Tysabri Diary
    Ewizabeth's Tysabri Diary
    Fabiola's Tysabri Diary
    Georgina's Tysabri Diary
    Jan's Tysabri Diary
    Jayne's Tysabri Diary
    Jill's Tysabri Diary
    John W's Tysabri Diary
    Kara's Tysabri Diary
    Karen's Tysabri Diary
    Kate's Tysabri Diary
    Kirsty's Tysabri Diary
    Krissie's Tysabri Diary
    Laura's Tysabri Diary
    Lauren's Tysabri Diary
    Lisa's Tysabri Diary
    Mandy's Tysabri Diary
    Martha Rogers' Tysabri Diary
    Melissa's Tysabri Diary
    Natasha's Tysabri Diary
    Neil’s Tysabri Diary
    Nicky's Tysabri Diary
    Nutty's Tysabri Diary
    Patti's Tysabri Diary
    Paula's Tysabri Diary
    Richard's Tysabri Diary
    Richard's Tysabri Diary
    Sarah P's Tysabri Diary
    Sarah's Tysabri Diary
    Shane's Tysabri Diary
    Simon's Tysabri Diary
    Sonya's Tysabri Diary
    Stuart S's Tysabri Diary
    Sue Lawrence's Tysabri Diary
    Tariq's Tysabri Diary
    Tina's Tysabri Diary
    Tony's Tysabri Diary


    Did you find this information useful? Would you like to comment on this page? Let us know what you think! We welcome all comments and feedback on any aspect of our website - please click here to contact us.