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Recently diagnosed & confused

After a few years of tests i have finally been diagnosed with MS and have been injecting Copaxone for a few weeks.
Its a minefield of emotions. On 1 side i think well I’ve had this weird numbness in my legs for 3 years & not had any relapses since so whats all the fretting about. Then there’s that small part that seaps through every so often worrying that i won’t be able to watch my 3 year old daughter grow up, i will be paralysed n becomeva burden to my family every now & then.
Everyones worried about me & they don’t understand why the last thing i want to do is talk about it.
Im 35, feel mostly fit and well. Is it really naive of me to think that deterioration will be no more than just getting old & that i am not going to be paralysed & waste away? Actually don’t answer that.
Wheres the positive mental attitude? Surely there’s people out there that have MS but live practically normal lives?

Hi I’ll answer your question - no-one knows what the future holds and MS impacts on people differently. I’ve had MS since childhood and I’m a success. I gained degrees, had a great career, got married and had children (all grown to adulthood now), travelled extensively, climbed mountains and have thoroughly enjoyed my life. Yes its’ been difficult at times but whose life goes by without difficulties. I’m in a wheelchair now and I’m still enjoying life as I use it as a tool to get out and about as much as I can (not at the moment because of Covid). I love my life and MS has just been one part of it. I’ve never been on DMDs in fact never been offered them but the younger generation has more chances to slow the progression with them. Be brave and live and enjoy your life. :kissing_heart:

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Thank you for your reply.
Sounds like your loving and living life and thats what i want to do. After all i’ve probably had MS this entire time & just not known so what is the difference now.
MS is just a small part of the bigger picture & for me its not going to be an excuse for anything unless absolutely necessary. Fingers crossed x

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Hey, I remember diagnosis so well. I am 36 and was diagnosed 6 years ago. I have 3 kids and intend to see them grow up! I live a completely normal life, I work full time and never stopped (I am the CFO of an international business). Relapses are the only times when things get a bit complicated. I just had to adapt and change a few things to live with MS.
Shutting down and not talking about it is a standard coping mechanism…I did it. I did it for years!
Opening up (when you feel it is right) was one of the best thing I did. You spread the burden and the worries amongst a few people, you then get support from a wider group and you (and the family) all benefit.

Wishing you all the best! This forum is a safe space, full of empathy, advices and humour.
Alex

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Hello

Welcome to the forum.

I suspect your reaction to diagnosis is fairly common. On the one hand at least now you have an answer to the problems that have been plaguing you. But on the other hand, you now have a definitive diagnosis of MS. Which is scary.

It’s right to fear the future when diagnosed with something as uncertain and seemingly random as this. But feeling so scared you virtually paralyse yourself due to the fear is not good for your mental health and won’t help as you are getting used to your ‘new normal’.

Being on a disease modifying drug is the best way of staving off serious disability in the future. Copaxone is a rather old drug now and while it is great for its small chance of side effects, it isn’t the most effective drug for relapse reduction rate.

So if you find over the next year or so that you are experiencing relapses in spite of copaxone, you could alway switch to a more effective drug. Have a look at https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid All the drugs licensed for relapsing remitting MS are listed. The way to look at the various drugs is to compare their relapse reduction rate with their potential for side effects.

I can’t say, no one can say, that you either will or won’t become disabled due to MS (paralysis is unlikely though!). That’s one of the most difficult things to live with, the thought of being so difficult to predict.

But, the very best advice I can offer you is to get, and stay, as fit as you possibly can. I really wish someone had said that to me 20 years ago. Because I wasn’t very fit to begin with, when relapses hit, my body was unprepared to pick up the pieces left fighting the bits of me attacked by my own immune system.

If you manage to get (or remain) fit and active plus stay on a good DMD to avoid as many relapses as possible, there is no reason why you shouldn’t stay as healthy as you are today.

Sue

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Thank you for sharing Alex. I know there are many people who suffer terribly with MS and the stories are just awful. Whilst this is the case for some I don’t want MS to control who I am day to day. I appreciate your comments.

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Sorry still getting my head around using this forum. Sue, It’s nice to hear my reaction is fairly common, after all when it happens you feel like the only one in the world and i have found all the comments very helpful. I have been sharing these with my mum and husband hoping it helps as I don’t want to talk about it.
I plan to give the Copaxone 6 months and see how I am getting on. I have only had two relapses in 10 years I think and so fingers crossed.
Funny you should mention about the fitness thing as I have started seeing a personal trainer since last winter to help build up my muscles for other personal reasons and to be honest because it is something I can control. Definitely that is one of the worst things about this I am not good when I am not in control. Thanks again.

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I am in the same boat, I have just been diagnosed, not even at the stage of type or getting drugs and it is a rollercoaster of emotions. I have a 4 year old boy and I am determined to stay as healthy as I can for him. The doctors have repeatedly told me over the past few months that with the drugs we can lead a normal life, I am just focusing on that. Getting fit does seem like a very good plan. This forum is great as my friends and family really don’t know what to say, most probably don’t even know much about MS, I say that like I do.

If it helps Linsey I have now been injected 3 times a week for 3months. I haven’t had any relapses, my injections mostly are not as painful & it has just become a normal day to day thing.
My friends & family don’t know much about it but these forums do help. If you have any questions once your medication comes if I can I would be happy to help.
I regularly watch headspace meditation & guide to sleep on netflix to try to reduce stress and I am taking some vitamins hoping every little helps.

I’m taking vitamin D, should I be taking other ones too? Thank you, the amount of different drugs looks like a minefield. Do you inject yourself or have to go in for that? I’m still waiting for my MS team to contact me, I unable to think about anything else.

I inject copaxone 3 times a week you just press a button & it does it for you. I’m taking feroglobin it wasn’t suggested by a professional to me but it has iron in it & helps with fatigue. You only notice when you don’t take one. Now I’ve got used to it I am much more relaxed with the whole situation x

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Hello Linsey

If your disease modifying drug is an injectable (eg Copaxone or Plegridy), you inject yourself. It’s subcutaneous (just under the skin) and it’s a tiny needle so doesn’t hurt. Honest.

The first couple of times you sort of have to force your hand to do it! But it soon gets easier. Other drugs are oral (Tecfidera / Aubagio) or infusion, so done at the hospital.

Hopefully soon you’ll have the conversation with you neurologist / MS nurse to debate which drug you’ll get.

Have a look at MS Decisions aid | MS Trust That details all the available DMDs. Also see Early treatment | Multiple Sclerosis Society UK That might help you to think about taking a good DMD.

Sue

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Hi there, I was diagnosed aged 45 (but told I’d probably been developing MS for 10-20 years before that). I had an 11 year old and a 14 year old at the time. I panicked and bought myself a wheelchair in a local mobility shop sale…just in case…
Since then (I am now 65) the children have grown up to be married and I have a grandchild on the way, begun a new teaching career, which I only just retired from, and travelled the world.
I consider myself lucky that I was diagnosed when NICE were just waking up to the fact that they had to approve more drugs for RRMS and my consultant put me on Rebif immediately (for 10 years) and I’ve been on Tysabri since. Who knows whether I would have continued to have regular relapses if I hadn’t had the drugs but I feel like I gave myself the best chance.
I can walk quite a few miles, can be a bit forgetful sometimes (but I put that down to old age) and I am more worried about Covid than MS…

J x

PS - the wheelchair is still in the garage!

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Hi Sue, thank you, they’re great links. I’m going to avoid the ones with depression as a side effect after a bad experience with acne drugs in my teens. At least now I will be more knowledgeable when the MS team so get in touch.

That’s amazing and really what I need to hear right now. I know everyone has a different journey but hearing positive stories is really helpful, thank you J xx