OK I was diagnosed November 2017 with MS and since then I am just terrified of what my future holds I am 28 years old I have two children six and four in a matter how much I try I am so fearful of my future it makes me sick to my stomach I’m also working with my doctor to get on medication which the medication terrifies me in itself but the side effects I am going for a Ba OK I was diagnosed November 2017 with MS and since then I am just terrified of what my future holds I am 28 years old I have two children six and four in a matter how much I try I am so fearful of my future it makes me sick to my stomach I’m also working with my doctor to get on medication which the medication terrifies me in itself but the side effects I am going for a abigio First and praying that it works because the others completely freaked me out with the PML risk and all that stuff I’ve change my diet started working out and I’m trying to do everything in my power that I can so I’ll be OK but I can’t stop crying and I’m trying to keep it from my kids I don’t want them to worry about me but it’s getting really hard I think I’m gonna go talk to a therapist I would love to hear if anyone has any positive stories and I know everybody’s different but I’m really struggling
Ok T, breathe (I am known for abbreviating names). Is it RRMS? DMDs are a frontline treatment. You need to weigh up the pros & cons of each offered. Therapist input is a good thing. Kiddies just need to know that sometimes Mum is sick, they are too young in my opinion to understand the dynamics of MS, it’s complicated to us, how are they supposed to grasp it. Do name it to them though, they need to put a name to it. My Grandchildren know that Nainy (me) is sometimes very sick, they know it’s called MS & they know it has an impact on mine/their life. I am lucky I haven’t had to make them carers, hubby does that. I don’t know your situation on this. I am SPMS, I had many years as RRMS with very little probs, depends what neuro has said. My guess is RR, hence DMDs. Focus on the positive, you have been offered meds, good thing. Your fears need to be addressed, speak to someone asap. You will get through this horrible time sweetheart, kiddies will be a lot older & hopefully what you’ve experienced will be it, it may progress, it hopefully will not. Enjoy your children & life, meds will make a huge difference Tracey xx
Aw you sound like you’re in a really bad place.
Have a look at https://www.mstrust.org.uk/a-z/aubagio-teriflunomide This will explain more about Aubagio; it’s effectiveness and potential side effects. You may find that Aubagio suits you and holds the relapses at bay and you may find there are no side effects. That’s the most irritating thing about MS, we are all so different, and our reaction to the different drugs varies from person to person. So once you start the drug, you could find that you don’t have another relapse for years if ever.
But if it doesn’t work like that, then the best way to protect your health and your children is to reduce relapses and severity of relapses. I understand that you are fearful of side effects. But honestly, the risk of PML is really quite low now. If you take Tecfidera and your lymphocytes go down very low, they take you off the drug. If you take Tysabri, your JCV status is regularly checked and if you are high risk, they stop the drug. So taking a different drug if Aubagio doesn’t suit you, shouldn’t be a big problem.
Meanwhile, you are doing the right thing by talking about having counselling. It should help you to talk about how you are feeling with regard to the MS diagnosis. Meanwhile, there are people on this forum who are happy to give you help and guidance about the various issues.
Best of luck.
Hello es as of now Dr say RRMS I am trying to live for the day but man is it hard. I really appreciate your comment I am hoping a therapists can maybe give me coping skills. Cause all I am doing right now is freaking myself out with all the what ifs. ugh I am starting with aubogio the others scare me with pml risk.
Your fear is ‘normal’… Ok so my kids are both at uni. That doesn’t stop me feeling scared. I can’t emagine how much stronger that fear is with young dependent s.
Be kind to yourself. Except that fear of what could happen, while trying to except what has, is huge. It’s taken me 8 months to acknowledge that it’s ‘huge’.
You have lots to deal with, but please don’t be cross with your self for finding it hard to deal with your Dignoses. It’s scary, it’s shit. But hopefully you. Will get a good DMD and you will have many many years till it gets any worse.
Thank you for the comment I really am doing better than I was lol its just a constant battle with myself . How do you not worry about the future? I know everyone is different and it is so frustrating i am a control freak so this is giving me a run for my money. I like my nero who diagnosed me but I am also travelling to indy to see a specialist and make sure I am on right track i think it will give me piece of miknd.
Its very early days for you,when i was diagnosed i went through a range of emotions,i felt scared,and very angry too.It took me 2 years to even start to come to terms with it.You will find your own way of coping,we all do.try and live in the now,if not you will look back and be sorry for not enjoying the now.If you are really having a hard time try counselling and CBT to talk your fears through.
Hi I have had ms for 7 years now I just wanted to say you must be positive when I had my first episode my right side of my body was effected I. Such as my co-ordination was out but could still move them . I too was terrified it was thought that I had a stroke. Now today all these years later I have No disability and am taking Tecfidra and have been for the past year. Pml risk ? None as I’m not JVC positive. I had a few hot flushes and also a few indigestion problems when I first started but none now I haven’t had any relapses since starting and am having my first MRI Scan to check that the drug is working it’s in February. I presume it must be. My main ms problem is fatigue. Not the sleepy type but the exhausting one. I have to pace myself sometimes I will have to rest between stuff like housework etc but also I have days where I don’t know I have ms at all. I hope this will make you positive! And feel better for the future. Ann x
Hello there lovely. Fear is normal and natural, it’s a really big thing and I think we’d all be a bit surprised if you didn’t feel this way. I’m RRMS and I’ve been diagnosed for roughly 10 years. I still work full time but I’ve had to learn when enough is enough as fatigue is a problem. Be kind to yourself, be kind to your family, I had my big relapse when my son was about 9 or 10 so I told him then, lots of useful booklets from the MS Society were so helpful. I’m very much my own advocate and ask questions ALL the time! I’m also learning not to be scared of it, there’s more to me than a pesky disease. I currently take Tecfidera, was previously on Avonex but had to change from that due to an entirely unconnected disease that popped up from nowhere! Hope this helps a little bit, I’ll try to come back here a bit more often! Tina x