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Newly diagnosed

Hi all am new here,

Just been finally diagnosed with remitting relapse ms turns out they think I’ve had it for a while looking at point in my medical history that didn’t flag a diagnosis of ms. Went to a&e hospital with drop foot and got an mri scan which ended with a week stay on steroids lots of blood tests and a lumbar puncture pointing to ms symptoms. Been in limbo land till today I guess which am getting at as I don’t know how to finally feel been relieved,scared an emotion mess crying at the least wee thing. Think am just wanting to know am not alone on how am feeling.

Hi Zara, so sorry to hear about your experience.How emotional you are is total normal and expected - let it out! You are not alone, take care of yourself x

Think it was information overload today got a few treatment plans to look over and loads of info for other stuff as I’ve been so positive while in limbo land

Hello Zara

It doesn’t sound unusual to feel really emotional about getting a diagnosis of MS. Let’s face it, who the hell is going to feel positive about it? (Unless you’ve been in limbo for years and convinced you have it, in which case a diagnosis is a good thing - sorry Zara, had to add that because some people are the reverse of you!)

The fact is, you are not alone. It’s a perfectly reasonable thing to be shocked and horrified at the thought of such a diagnosis. It puts all kinds of thoughts into your head. To do with health, mobility, money, work, relationships, family. There isn’t one thing that ultimately doesn’t cross your mind, regardless of your current situation in life.

One good thing is that there are now many disease modifying drugs (DMDs) available for people with relapsing remitting MS. These are supposed to reduce the number and severity of relapses. Many people get on a DMD that suits them, and they don’t have too much trouble with MS for many years.

Do you have an MS nurse assigned to you yet? If not, hopefully you will soon. And s/he will guide you through the DMD process and help you to get your head round the whole thing. If you haven’t been given the contact details of a nurse, try phoning the neurologists secretary and ask for help in contacting an MS nurse.

And keep talking to us here. We’ll try and help over the next weeks and months with whatever you need.

Sue

Thanks sue for making me realise am not alone yeah I have a ms nurse who I met at my neurologist app yesterday and she was great talked through my treatment plans available gave me lots of info to look over so I can decide which one I would be able to cope with looking at the side effects.

Hi Zara

Try looking at the various DMD options offered to you with the help of https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid You can compare the various benefits and side effects quite easily and it might make things more straightforward for you to decide.

Keep asking questions, on here, or ask your MS nurse. The more you learn about MS, the better equipped you are to deal with it.

Just don’t expect to ‘come to terms’, or ‘accept’ it easily or quickly. It’s a big thing, and as for me, I hate the bas*ard and won’t ever ‘accept’ it. And that’s after 21 years. MS is a git. And you’ve been unlucky. As have all of us with MS, or even those people who are still trying to sort out a diagnosis of some kind.

Sue

Hi Zara,

It’s no wonder that you’ve got mixed emotions. Getting the news that you’ve got MS is always a bombshell.

It sounds as if your MS Nurse is on the ball. A good MS Nurse will be your new best friend. They are always on your side.

And more good news - this is the best MS Forum on the planet. The combined knowledge and experience of all our contributors easily outweighs any neurologist, so, as Sue says, if you have a question or even a tiny niggle, just ask us. People from all over the world visit these pages because they can’t find anything better.

You are most definitely not on your own.

Best wishes,

Anthony

Thanks sue and Anthony will be reaching out more if am ever stuck about anything. My ms nurse has been fantastic with what options are available for me as my neurologist thinks I’ve had it for years and it’s went unnoticed going with the liaisons on my brain and spinal cord so he’s wanting to start with aggressive treatment. Think that was the scary part for not going sooner to the doctors but no point in thinking of the shoulda,woulda just need to be positive and think of it as a new chapter of my life story because at the end of the day am still a Mum and life goes on just doing it slightly different from now on. (Long May my positive feeling continue)

by aggressive treatment are you talking about lemtrada (campath) or tysabri.

campath sounds great, i remember when it was known as alemtuzumab. there was a brilliant article in a local paper (manchester evening news) and i decided that i wanted to get onto it.

i asked my neuro, who despite being amazed that i knew and could pronounce it had to tell me that it wasn’t available then.

make the decision on what is right for you.

Tysabri is one of my options that my neurologist said as that’s the one am more leaning towards can’t remember they other ones as being Mum at my girls dancing lol xxx

Good. Do it. It’s an excellent option. And a monthly infusion is much less intrusive on your life than a lot of other DMDs. I took it for a few months and while I felt knackered for the couple of days after it, there really weren’t any downsides.

(My problem which meant I had to stop it was raised liver enzymes. Something I’ve been prone to, so while it’s a possibility, it’s not that common.)

Best of luck.

Sue

Think it’s the one am going to try gettin my blood work done next week so I can start as soon as. I can get this at my ms clinic in the same town I live which fits in better for my everyday life all the other options I need to go to a hosp in Glasgow and I don’t drive so would have to rely on my husband taking me and he works 4 days on and 4 days off xxx

well done for making the decision.

hope it goes well for you.

Im new to all this but nurology consultant has started me on Tysabri. Only had infusion so early days. But wondering if anyone knows how long it takes to get in system. Thanks

It will probably take a few infusions to start working but you are unlikely to notice any difference in your symptoms. The idea of Tysabri, as with all DMDs is that they reduce the number and severity of relapses.

Some people have reported actual improvements from Tysabri. But you absolutely can’t expect this. If you do, you’ll be horribly disappointed if/when you don’t get any yourself.

So think about it as an insurance policy. If it does what it should, you won’t get disabling relapses. And that is absolutely worth having.

Sue