Long time no speak

Hi everyone, just logged on here for the first time in months to be greeted by a lovely message from JBK asking after me and Rachael. I hope all are doing as well as they can and not suffering too many problems escpecially now the weather is changing and becoming a bit more warm. Rachael is doing really well, she has been on Tysabri now for 8 months with no relapses, she had a pseudo relapse a few months ago but this was due to having shingles and not a real relapse so Tysabri seems to be doing it’s job at keeping the disease at a steady level. She has been working in a nursery now for about 3 months and only missed the days she goes for her infusion, they have been very understanding about her taking 1 day off a month. Unfortunately she is still waiting on the DVLA getting back to her with her provisional, she applied for that in Jan, DVLA wrote to her neurologist in March, he replied she was fine to drive at the very beginning of April and she has phoned them several times but they are waiting on their medical guy to read the report before making their decision, I don’t know why it is taking so long as I think nearly 6 months to approve a provisional is a bit excessive but hey ho, it is what it is. Rachael was talking about moving out to live in a city about 30 miles away with her friend and both of them were applying for jobs there, her friend got a job in a nursery but so far Rachael has had no luck but was looking at flats for her and her friend to rent. This week she has changed her mind as she was a little fatigued and just wanted to sit cuddling me and needed me to reassure her, think the thought of having to take care of herself and the fear of needing me and my being so far away scared her so she decided this week she was not moving. She will probably change her mind again and it scares the bejesus out of me but I have to let her go as she says she may not be able to live by herself in the future so she has to do things just now while she feels so well. She is also going on holiday with her friend, one week in Ibiza, I am scared witless about this but know I just have to wave her off and hope she comes back the way she left, not pregnant, no other disease and with great stories.

Linda x

such good news that Rachaels on tysabri and its clearly working for her,i remember you coming on here a lot when you were very worried,and Rachael seemed very ill at the time,its good to see that shes living her youung life to the full now,bet you are so relieved,and much happier now.

J x

Hi Linda I’m fairly new on here but just wanted to say hello. Your daughters early symptoms mirrored mine, I’ve recently had the dizziness/sickness, it felt like hell. I’m quite a but older (32) and was dx in Dec. I can’t imagine getting that news at 16. So nice to hear she is doing well. I’ve been off work as started my relapse in March and had scary moments feeling like I will never be able to carry on with my career. You’re post just reminded me that days often get better and life does move forward. Thank you and all the best to Rachael L xx

Hi Star1981 an Mrs J, thank you for responses. L, are you on any meds, Rachae started with Rebif but she had all the side effects of it and it did not help at all, she started Tysabri in Nov and as not looked back. Don’t get me wrong it is not a miracle cure or anything near, if it works which it does for Rachael it reduces relapses and allows your lesions to heal so leading to a better quality of life. She is still fatigued, still sore, still gets the odd numbness but compared to what she was 6 months ago it is like night and day. All we have is hope for the future and if this med allows her to stay at this level until they hopefully find a cure then I am all for her being on it, although she was told it might be just for 2 years because the chance of getting PML after 2 years increases quite dramatically. Hope you start to feel better soon. Linda x

It is great to hear how well you and R are doing and making plans for the future, even if these do scare you. It is so nice to read a positive post. Take care Barney

Hi, nice to hear from you and how your daughter is doing.

How old is she now? I ask cos I thought she was only around 16…a bit young to be leaving home, but maybe she is 18, eh?

All us mums worry ourselves silly, when our kids leave home and I know you have extra cause for concern.

It will happen, hun,she will move out at some point, but you must let her go and let her know you are there for her.

i doubt I need to tell you all this, eh?

much luv POllyxx

Hi I have been diagnosed for 2 months and have started on tysabri, its great to read many positive things about how tysabri helps! going for my 3rd treatment next week.

It’s great to read your reply and she’s getting on with her life. I’m jealous a week in Ibiza would be great I’ve never had a girls holiday and don’t think it will be happening now. Lol. My mum and dad live round the corner from me and i have to move but it’s one storey building I need really with 2 kids and mum worried about being. 2 miles away, lol so they never stop worrying and I’m 32. It’s a horrible disease to have a such a young age. Hope Rachel continues to go from strength tl strength. Xx

Hi everyone, Rachael is not long turned 17 Polly so she is very young to be thinking of leaving home. But thankfully she was needing a cuddle and it reminded her she still needs me around so moving out has been put on the back burner (for now). Tysabri has been a life saver for Rachael, she goes for her 8th today and today is one year exactly from diagnosis. It takes patience as it is not a cure and it took about 3 infusions before Rachael started feeling the benefit but it has stopped her having relapses which in turn allowed her body to heal from previous relapses so all is good, it is still a scary as hell drug but the benefits so far outweigh the prospective side effects. Thank you for all your kind words. I really appreciate them. Lx

Thanks for bringing us up to date hun.

Things sound so much calmer than they were, when you were cimbing the wall with worry, eh?

Not to say you dont stil worry of course, but you know what I mean, I hope luv.

luv Pollx