Hi everyone, as a couple of you know I have been rather absent from the site for a while as was too sad and down to reach out to offer advice or help or to ask for some. R started Tysabri in Nov as was having a relapse a month since diagnosis and Rebif was not working. Her life was mostly being in bed or just going out to neuro and MS nurse visits. Not a life for a 16 year old. Anywhoo, while lurking in the background on here I notices someone asking about Tysabri and I thought I would reply, this was about 2 weeks ago. While typing I realised R has not had a relapse since starting Tysabri and was actually walking straighter, had less fatigue and dizziness and had more energy. While my back was turned my daughter was coming back to me. So much so that when I came home from work last week she told me that as she is nearly 17 (birthday yesterday) she was applying for her provisional and had phoned to get her first driving lesson arranged, if in or around Ayrshire on the 1st Feb please stay off the roads, and was thinking about what she could do work wise for her future. The next day I came home from work she told me she had phoned local nurseries about apprenticeships in childcare and had the phone number of a government funded apprenticeship scheme and had phoned them and they would be sending out an application. She received a phone call this morning to go for interview this afternoon and they phoned her earlier to tell her she has got the apprenticeship, will be starting sometime in the next couple of weeks. She had to put on her application she was in receipt of ESA and PIP and while at interview they asked what she received them for, she told them she had MS but was on a new treatment and had stopped having relapses so they know from the get go she has MS. She is having a bit of a melt down as she is scared she won’t manage as she feels ill, she is scared she messes it up, she is scared to push herself incase she gets unwell and ends up in hospital again. I am trying to comfort her and tell her she has to push herself as she has no option, this way she will find her limit and if she pushes too hard and ends up in hospital we will deal with that. The only downside is really the start time, it is 8 am and as she takes Amitryptaline (sp?) at night she does not wake up till 11 am and is very dopy for a while. I don’t know what to do about that as she needs it for neurological pain and to help her sleep. Anyway, it is good news and I am so proud of her strength and determination. L x
Im so glad to hear things are looking up at last for you all and you must be so proud. Regarding medication could she take this earlier or look into a different med. I take amitryptaline at night and fine in the morning but I do take at 7 ish and am on a low dose. I know all meds have different reactions in all of us so there maybe something else that doesnt cause the drowsiness the next day. As a mum myself I think I would contact the employees and see if any adjustments could be put into place in case she needs them as its so important that this is a positive experience, explain that she is more than capable of doing the job but that as a mum you are just understandably anxious and you dont want her to fail and would just like some reasurrance that there are options avaliable if she needs them. Others might advise differently but this is just what I would do, you could then reassure rachel that you can confidently work around any future issues that might arise xxx
At the interview she told them she has to go to a clinic every 4 weeks for her treatment and they said that was fine they would work around it which is promising. She has also decided to take her Amitryptaline earlier for the next few nights to try and work out which is the best time to take it so she can still get up in the morning. She is more than capable of doing the job I just hope she does not psyche herself out. Thank you for reply. Lx
Oh Linda, things are looking up at last! I am sooo pleased for Rachael and you, it must be lovely to feel like she has her life back. I agree about contacting them and explaining that the meds make it hard for her to get up early just in case she is running a little late one day.
It’s a good idea to take the amitriptyline a bit earlier. I’m only on 20mg so it doesn’t seem to affect me too badly especially as I’ve now been on it for 4 years but I do try to take it at the same time each night so that I can get up in the morning.
A nursery is an ideal place to start her career as her colleagues are naturally going to be caring individuals and I’m sure they will look after her and be able to spot when she needs a rest. I’m so excited for her, please do come back and update us every now and then. I’m sure I’m not the only one who feels a bit like a surrogate aunty as I’ve followed Rachael’s story these past few months.
Best of luck to you Rachael!
Tracey xx
Thanks Tracey, will pass on your lovely message from aunty Tracey. 
Lx
Hi Linda,
I was thinking of you both over Christmas and hoping you had a good one. It is great to hear such good news and its sounds like Rachael had turned a corner both physically and mentally. I am delighted for her and very impressed at her drive to do everything a young girl her age should be doing (when so many healthy ones just lie about and do nowt). As my granny would say - more power to her elbow!!! (?)
I have every faith that no matter what MS throws at you two that you will cope.
Big happy hugs from another who feels like a surrogate aunty (aren’t we all soppy sods)
JBK xxxxx