How did you get on Mrs H ???

Hello there Mrs H. I probably misread but did you get the nurse visit you with the Rebif today? How did it all go? Sorry if I’ve got the wrong day but I think you said she was visiting today. Cheers Anne-Marie

Hi Anne-Marie It was today…I went into the neuro day ward and it was all there waiting for me. The nurse went through everything in great detail…she was just so nice and talked through MS without any hurry. So that last little bit of unreality has been banished to the locked box!! Anyway the Rebismart is a great tool to making the whole thing easy, trouble free and an awful lot less painful than I had built it up to be !! Drama queen…yes probably !! It actually hurts more when you have your finger pricked for those blood sugar level tests. I was truly surprised. Up until a couple of hours ago I was fine…I now have a slight headache, I’m a bit achey but nothing major and to be honest the fatigue has been horrendous this week so it could just be that. So far, I would def recommend it. Thank you so much for remembering and caring. Xx

So glad it went well for you. What dosage have you started on? Was the nurse from Rebif or is she your regular ms nurse? It’s really encouraging that you’re not suffering any major side effects. It’s made me a bit more confident about choosing Rebif as I still haven’t quite decided but 95% there now. Keep us posted with your progress. Take care Anne-Marie

She was my allocated MS nurse at the hospital. I don’t know what the starting dosage is…it just says titration on the Rebismart but I think it’s a 22 and there are three doses in. The nurse sets it all up for you. It even says “welcome Catherine” when you switch it on !! The only way it could be better, is if we’re pink !! Oh, also brilliant pack with full instructions and “passport”. Very comprehensive…obviously a lot of money gone into manufacturing it …and it shows. At the moment, I would def say, go for it. Xx

Aah really good to hear its going well with this Mrs H. Please keep us posted especially as it seems many of us are trying to make that DMD decision. Hope your well. X x x

Hi lisalou, Tomorrow is next injection…on my own this time !! But after yesterday, I really have no qualms about it. Today, I can report, still a very slight headache and vague achey feeling…but to be honest, hubby is working very late at the moment and with the best will in the world, wakes me up when he comes home, so it could be just tiredness plus my fatigue and dizziness has been at new levels for the last couple of weeks. I really am not convinced that it’s the effects of the Rebif. However, today I do have a small, pinky splodge on my stomach where I injected. Nothing troublesome and you probably wouldn’t notice it unless I pointed it out to you. So, all in all, still confident that I made the right choice short and long term. Xx

Aah thats reassuring. Hope it continues to be trouble free. What were your symptoms and relapse history prior to DMDs if you don’t mind me asking. Ive had m.s since 24 , now 32 and had three relapses in just over two years, prior to that last one wss August 04. X

Hi Gosh it’s a long story…but in a nutshell, funny goings on in August, saw neuro, booked MRI in 3 months. Flew to Greece early sept, got worse, got home saw GP who basically went, oh hell at the state of me !! Saw neuro next day, Tuesday, MRI Wednesday, secretary rang that afternoon to tell me it is MS, thurs, fri, sat had if steroids. I had an MRI in 2002 which apparently showed lesions but was told it was stress at work. Many attacks over the years but ultimate diagnosis has always been vertigo and after the way I had been made to feel in 2002, I was too scared to push it any further. I’ve lost count of the number of times over the last 10 years that I’ve been to buy new shoes after my right toes went numb and I assumed my shoes were too high / tight !! Main symptoms are continual vertigo, numbness and loss of feeling / sensation in right leg, arm, hand and foot and right side of head and face, horrendous fatigue, bladder weakness, trouble with speech and swallowing food, temperature issues, forgetfulness, trouble concentrating and constipation. I am 41, no children (my daughter died in 1992) and was a totally devoted, committed career woman. Have now been off sick for 6 months and not sure what is going to happen next. But neuro doesn’t hold out a “realistic” hope of me getting better from this attack as the damaged area in right in the middle of my CNS. He says I’ve been very unlucky. I am, needless to say, re assessing my future !! Xx Ps I don’t mind you asking anything at all.

Sounds like you’ve had an awful experience especially in 2002 … Awful that it went undiagnosed for so long. And I’m so sorry to hear about the loss of your daughter :frowning: I really hope the rebif works for you and makes your life better. I must say you come across as a very positive person with a great sense of humour and I’m a firm believer that this helps us cope although we have our down days. It does sound like you have been very unlucky but some of that stems from how you were dismissed in 2002… Gits. My symptoms have always been sensory…had permanent sensations in my hands since Christmas 2011. This latest relapse has caused a weak left leg, but I didn’t realise it was considered a relapse till two months after the weakness started so thing the damage has been done and consequently whilst its improving its not what it was. But I do now feel lucky to just have this for now but do worry it’ll progress all off a sudden given my last relapse was only sept. worry for my little boy :frowning: we have decided because of this uncertainty of this disease that we are not going to continue to have more children. Like you said above re assessing the future. Feel bad telling you my symptoms with whats going on for you, makes me feel like I’m whining unnecessarily really. Thanks for answering though. Xx P.s your posts often puta smile on my face x

Hey, don’t feel bad. I’m fine…the funny thing is, some days I go, holy €$¥£ I’ve got MS, other days I think, it’s just a bloomin infection, give me some anti biotics and other days, it’s just pure relief to be able to identify what’s responsible for all this and know its not in my imagination !! And I really miss people with being off work sick, I love being on this forum and chatting to people. It’s really good to share experiences and ask and answer questions. Xx

Well hopefully this rebif will do the trick and get you back in work? I hope you hae a good employer. I’m very lucky to have that. Makes a massive difference. Another option is volunteering in an m.s therapy centre…you sound like you’d put a smile on people’s faces really easily. This forum is fab it really is. I come on in spurts, generally when my m,s is really causing problems which I know is wrong but when it isn’t I don’t have anything to post but I now realise that it’s not just about posting but replying and helping. :slight_smile: x x x

I don’t honestly think I’m going to be able to do my job, let alone, get there…I’m not driving anymore. I work for the government, in law and so far my manager and HR have been fantastically supportive. They are coming out again on Monday and I’m going to have to tell them what the neuro said about not getting better. I don’t think the Rebif will change that…just reduce future relapses. Hence the re assessing …I’m housebound without my hubby and DLA have just awarded me higher rate…all kind of adds up to me not returning. But hey, I worked hard to achieve what I did…maybe it’s time to focus on me, have my life back and enjoy every moment. And be proud of the success I had. Xx

Yes I agree very much with your last sentence Hun. Maybe via DLA you could get a notability car which you could drive. My previous manager has PP m.s, age 52 and still working despite how shocking her walking is. She has a motobility car and loves it. Made a big difference to her life. However she works because her home life isn’t great and work keeps her sane. It’s good your work understand, makes life easier! Though I do think you should consider what you could give to others…I sense you’d make a difference with your positive attitude, I really do :slight_smile: x

Aah thanks…

:-)just saying what I think x