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First appointment done

Hi I’ve just had my first appointment with the ms nurse and I found it very overwhelming as they is so much information to take in. I was given a booklet of 11 different medications and told to go away have a read and choose one to take. After being told what medication to take for the last 4 years it is weird to be told you choose. Has everyone been told this? How did you know which one is the best one to choose? Amy help in this baffling decision would.be helpful. Thank you.

There is no cure for any form of MS. Any medications you take, with a diagnosis of MS won’t make any difference.

Pain killers, muscle relaxants, anti depressants & all the other bits & bobs are for if you have further problems.

Relievers of sort, for if it’s too bad to cope.

Try a healthier diet & way of life. You stand a far better chance. Taking medication is not a badge of illness.

All the best. Terry

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Hi Sarah, first take a deep breath and breeeeeathe!

There are lots of folk here who will be only to happy to offer advice on medication.

Sometimes we feel so overwhelmed by this condition and think we won’t cope, but do you know what? We can and we will.

Your MS nurse may not realise how you feel, why not ring her for clarification on certain ones.

Sorry, but I can’t help personally, but I know others will.

I just felt your panic and wanted to help.

Pollsx

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Hi Sarah

Don’t panic , it is all on your terms so go as fast as you feel you want to !

For me I was surprised I had the choice and I wasn’t overly comfortable that the decision was being made by me and not a doctor - what if I got it wrong??

Now I know I couldn’t because as for yourself all of the first line DMDs are relevant to you and are designed to do the desired job of slowing disability and preventing further relapse.

Deciding was hard!

At first I sat at home with the booklets crying because I was scared and because I just didn’t know what to do!

In the end what worked best for me was to look at which DMD looked like it may best fit into my life and go through a process of elimination

For example I work full time so a daily injection may have proved hard with finding time and potential side effects and also I would rather minimise the amount of needles in the house because of my daughter ( I now know this isn’t a biggie because of sharps bins etc)

I didn’t have a good track record with remembering my contraceptive pill (which is obviously quite important) so a daily pill probably wouldn’t work for me

I hated injections and didn’t want to be responsible for making the injection up and didn’t want to see the needle …

So I was left with Plegridy a fortnightly injection that just looks like a pen and I have never looked back since !!

I never would have believed I inject at home and how it has just become part of my life I am a big advocate of Plegridy !!

When I started my injections an active nurse came to my house to show me how to do it and me and my other half went to a group appointment where the nurses presented all of the treatments and their potential side effects - I am sure there will be similar provision where you are

Hope I was of some help to you - keep coming back and letting us know and be kind to yourself

x

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The amount of information to take in is quite astounding, and being told to make your own decision about which drug you wish to use is something I feel that the neurologist/nurses should give more advice on -I felt like I was just dropped in the deep end with nowhere near enough guidance! In the end I just went with my gut feeling… I’m on Rebif (Beta Interferon), which is really quite antiquated these days, but it works. And while it still works, I’ll carry on using it… save the big guns for if they’re needed later. By which time maybe they’ll have some new ‘big guns’ anyway… best of luck with making your decision!

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Thank you yes panic definitely kick on but feeling abit more guided now.

well i must be the exception to your post, DMDs have helped me a lot, yes there is no cure but telling someone this is not helpful.

and a person that chooses to take meds should not be shamed about it

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well said Faula, totally agree with you. DMD’s certainly do make a difference, do you think they would be prescribed by a cash-strapped NHS is they didn’t??

I chose Plegridy - the self injection is really eay, not painful and I’ve been lucky to have very minimal side effects.