Hey everyone my name is Hannah I am 32 years old and am currently undergoing tests to determine what kind of MS I have, I’ve had my head and spinal scan which my spine was absolutely fine but in my head showed lots of lesions with enlarged ventricles (no idea what that means) I have a lumbar puncture on Friday which I’m not looking forward to, I’m struggling to come to terms with all this and I don’t know what to do, I’ve also got 2 kids a 7 year old and a 6 months old and I feel like a failure
You are not a failure your body is just being a butt. Being 35 and just diagnosed with MS (Primary Progressive) in September I know how you are feeling. I was able to forgo the lumbar puncture as my MRIs (3 of the bloody things) showed significant lesions on my brain and spine. Hopefully the lumber puncture goes well for you and will be a quick procedure. If you ever need someone to talk to or need someone just to listen drop me a message any time.
I am sorry that you are having such a worrying time. It can feel relentless when we are beset by worries but obliged to get on with meeting the demands of a busy life as if we didn’t have a care in the world. You are doing OK. Even if you don’t feel on top form, you are the centre of your children’s world, and nothing changes that.
I keep on asking the same question to myself ‘why me?’ I’ve no hereditary reason as to why I have this so I don’t understand thankyou for your reply though, I appreciate it, just feeling sorry for myself I guess
Hello Hannah, welcome aboard.
Just to second the other answers and indeed more importantly than any other blabbering I can perform, you are absolutely not a failure, and you are absolutely not an isolated case of strangeness either. The vast vast majority of people who get MS have it strike as lightning from a clear sky with no idea indeed as to [why me?], and just have to somehow manage as close to normal a life as possible despite the unfairness of it all. We all try our best with the cards dealt, and no-one can expect anymore than that.
MS is more common in northern Europe than anywhere else in the world, due to lack of sunlight and vitamin D it is speculated, but beyond the virus that causes glandular fever which most people get (that I also had) and general immune system issues in the family (which I also have), no particular “It’s definitely this” things have appeared yet it seems. Anyone can get MS, and everyone’s MS is different. Many people, apparently, have very little issues with MS and hardly notice symptoms for many years, and so do not sign your own death certificate yet! Treatment now is well beyond even just a couple of years ago, and the right medicine for your body can keep you rather well for a long time to enjoy life with your children!
Despite tons of flareups over my 2 years so far as well as a change of medicine with hopefully another one on the way, I have managed to avoid very debilitating symptoms, and that is indeed the story of this illness really. We are playing darts. Where we might get struck next time is completely up in the air.
It’s not like everyone is heading straight for a wheelchair, even if many do end up there. That also means there is no point in worrying yourself to tears, it’ll be what it’ll be! Instead let’s focus on what’s important.
I’m 37 with a 1 year old boy, so perhaps a little similar. It’s not our children’s fault, or indeed ours, that this has happened, but feeling guilty about it will do the little angels no favours either. Let’s just do what we can. Enjoy the little smiles of everyday life. Have a piece of chocolate when it’s a bad day.
Once you get into a medicine routine things might very well calm down for you a bit. A matter of balance that has to fit you and only you personally, it’ll be looking at the level of immune suppression as well as potential side effects. There are so very many different ones. You’ll figure it out with your doctor.
You’re not alone. Reach out all around you, even if just to us on this forum. There are little allies here and there everywhere. Freely mail anytime even if you just need to complain a little. Speak frankly and openly, all the easier for others to help you and support you. It’s fine to just sit down and cry a little sometimes, it’s important to be refreshed. It’s important to take proper care of yourself. Then you’ll be able to build up that little surplus that lets you take care of your little children as well. We’re all allies, we all want what’s best for each other.
You’ll be alright.
You are not a failure at all. I was diagnosed in September last year, and have been through much the same ‘why me’ and being angry, once you get a complete diagnosis and a plan is put into place things will become easier. The MS Nurse that you are put into contact with will be a great source of information. Mine has been great to the point that if I have any worries I drop her an email (I can’t always speak very well), and she gets back to me.
I had the MRI’s and the lumbar puncture, which I wasn’t looking forward to at all, but the guy that did it was amazing and I can honestly say I didn’t feel a thing, just some pressure. Afterwards I spent about 4 or 5 days lying down a lot as I got headaches, which is perfectly normal and doesn’t happen to everyone.
The people on here have been brilliant, they are incredibly helpful and will support you when you need some people who understand that sometimes your legs or hands don’t work quite as they should, or you can’t speak properly, or maybe you’re just having one of those painful or difficult days.
Having MS sucks, but try and make the most of things, those children need their mum.
Take care, and if you need to vent or just chat, we’re here.