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Newly diagnosed freaking out internally.help?

Basics, I’m 25, 6months married. I’ve been ‘unwell’ for about 8months now. Finally got results and definitive diagnosis of MS.

I really haven’t a clue where to start.

They want me on Copaxone, injections… I’m scared of needles now I’ll need to do it daily.

I’m already living it and I know I need to keep reminding myself if that but I haven’t a clue how to process this or continue my life. It’s been on hold because the symptoms have been so dehabilitating.

They said try the best bet diet… Never heard of it, soo confusing… I’m going to chose the AIP (Anti inflammatory protocol) because atleast that way I know people who’ve used it and my gp even says it’s be best.

We’re already changing our diet slowly anyway. But it’s tough when you can’t be in the kitchen cause the light drives you made and makes you unable to function. Etc…

My parents i let them know the night I got diagnosed, my husband was with me when they told me… And my parents have taken to telling their siblings in a hush hush kind of way just so people know. - probably answer why they’ve not seen me in a number of months…

I need to remember I’m already living it, I can’t change this, I have to accept it. It’s been this way for months I’ve learned to accept every new thing… I need to keep going…

hi ellie

it’s a massive shock to the system when you get a diagnosis.

i had a very flippant attitude towards it, which was great until the ms decided to kick back.

anyway let’s talk about copaxone.

i chose copaxone as my first DMT because it doesnt cause flu-like side effects.

it isn’t a big needle as it only needs to go just under the skin.

you will be trained in doing the jabs by your ms nurse.

honestly, try it and you’ll realise there’s nothing to be scared of.

carole x

Hi Ellie

As Carole said, it’s a huge shock to the system. It doesn’t matter how long you’ve had symptoms, what tests you’ve had or how much you thought you were prepared for it. It’s a great big slap in the face to hear the words, ‘you have MS’. Don’t expect to get used to the idea overnight, or to ‘accept’ it. It can take years (or never) to accept MS. So feel free to be furiously angry with it for derailing your life. To shout at it, even just in your head. To whinge and moan. But don’t forget, it’s not just you who’s been diagnosed with MS, your husband has too. In the sense that it is likely to affect his life too. And a good husband needs to know that you are still you, in spite of the F’ing awful disease.

With regard to DMDs, I’m a bit surprised you weren’t offered Tecfidera as an option (or in fact any otherdrugs). It has a better average relapse reduction rate than Copaxone and it’s an oral therapy rather than injectable. Plus, Tecfidera apparently works best when it’s the first DMD. Is it too late for you to question the drug you’ll be taking? Often people complain that they’re given a list of drugs and told to pick one. In your case it seems you’ve got no choice, your decision has been made for you. Then again Tecfidera does take some getting used to, with stomach issues particularly. You have to pack in food either side of the drug, so if you want to eat a low fat diet, Tecfidera isn’t the best drug!

I took Copaxone for 5 years and had absolutely no side effects, so in terms of side effects, it’s a pretty good drug. Some people get a bit of flushing (is super hot face) in the early days, I had it once. And during the time I took it, it worked pretty well for me, it was only towards the end that it stopped being as effective. So if you are going to be on Copaxone, I think it’s the least likely to impact on your life.

As far as injecting goes, it is far, far easier than you think. You either use an autoject device, where you press a button and the needle goes in automatically, or you just stick the needle in. That was my choice, and it seems that it’s actually better for your skin to just use the needle, you can end up bruised by the autoject. You stick the needle in the fattest parts of your body. On most women, that’s the thighs, the bum, stomach and maybe upper arm. Although my arms were always a bit skinny. And Carole will tell you, it’s better to use a plumper part. So don’t get too skinny. And above all, rotate your injection sites. Don’t get in the habit of using just one site, it’s very bad for your skin. So for me, I was thin when I was on Copaxone, but I always had a butt. So I injected my bum and my thighs most often (both sides and in different places), my stomach now and then and my arms rarely.

The needle is a few millimetres long. And very thin. Once you’ve done it a couple of times, it will be easy. The worst time will be the first, your brain tells your hand to just do it, but your hand just doesn’t want to. So you have to make it. Or even start off with getting your husband to stick you, then when you realise you can hardly feel it, start doing it yourself.

Best of luck with it. Don’t forget, there are plenty of people on this forum and Everyday Living who will listen to you when you get pissed off with MS. And people who will give you advice, or just empathy, if and when you need it.

Sue

Hi, been through a hideous 18 months trying to get a diagnosis myself, 43 years old and a nurse. I knew what it was from the minute the shower water felt different on my arm. Just started a new job after 10 years in previous and a beautiful 3 year old daughter who needs her daddy. Now 18 months later permanent arm symptoms and loss of feeling and just had a change in MRI scans so meet the MS criteria! Started on Tecfidera as drug of choice, highly recommended by treating Neurologist. I fully emphasise with the uncertainty ahead. It’s a rubbish disease but guess all we can do is try our best to embrace it. I am only just on this journey myself. Going to try mindfulness as a strategy. It’s a lonely place in the early days, mines day 14 :frowning: I wish you a merry Christmas and hope you get some relaxing time.

I’m unsure if it’s better or worse to have more knowledge from the outset, ie being a nurse has both its positives and negatives. The trouble is that you still have to learn to live with the bloody disease, regardless of how prepared you are for it.

You do sound very positive. Don’t expect to continue your upbeat mindset completely, we all have times when we want to shout and swear at it. So accept that you are bound to feel a bit aggrieved at times.

I hope Tecfidera is kind to you and turns out to be the best DMD. Hopefully no more relapses will hit you, and you can just continue to enjoy life and family.

Sue