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Help needed?

Hi Everyone,

I new on everyday living as i was on before diagnosis…but as of last night i have rrms!

I am doing fine and my neuro is really nice! He explained everything and went through all the meds available. He and i decided to start copaxone as it has least side effects and doesnt effect my fatigue as much! (i hope anyway). He’s refering me to the ms nurse and he said he has lots of paperwork to fill in, funding to approve and then meds to train me on and then start. So it is gonna take a while i think!

The question is…will it take ages to start meds? What do i do know, anyone i have to tell? What do i have to do with work? wow the list is endles…maybe i am freaking out a little?

I feel ok and what will be will be…i cant change that so i shall just carry on and be me regardless of the ms!

Any help or advice would be welcome as i am overwelmed with…what now!

Thanks

Lea xx

Hi Lea,

Sorry to hear about your diagnosis.

If you’re a driver, you need to tell the DVLA and (though this seems a highly controversial subject at the moment), your motor insurers. The latter will NOT raise your premiums or revoke your cover, but they do need to be kept in the picture.

If you have a mortgage, or may have critical insurance through any other channel (mine was through work - nothing to do with a mortgage), check the small print very carefully, as MS is usually a covered condition, and you may be entitled to claim. Often there is quite a strict time limit from the date of diagnosis (mine was three months), so dig out the paperwork as soon as you can, and check whether you can claim, and what the instructions are for doing so.

You are not obliged to tell work whatsoever, but IF you choose to, you will get the protection of anti-discrimination legislation from the start, regardless that you might not be very disabled (or disabled at all, to the untrained eye) at the moment. Work will be obliged to make “reasonable adjustments” to accommodate your health issues, although of course, that doesn’t mean you have to have to have any, if there are none you need at the moment. It should be a two way thing: work can’t move you to lighter duties, for example, unless you’ve had a discussion and agreed that is the best way to help you. Of course, if you don’t tell them, they don’t have to do anything at all - they’re not expected to be psychic, and help you with things they don’t know about.

I can’t think of anything else you need to do straight off.

I’m not on DMDs, but I gather it can take (at least) a few weeks to get started.

Hope this helps,

Tina

x

hi

thanks tina for everything…its all very useful.

Hubby still dealing with the shock so i will casually bring up the mortgage thing after our week off…will give him time to get his head around all this. Also i have printed out the DVLA form i need to fill in and send off. It all looks a bit much and i scared they make take my licence as i need it to get to work. Apart from a limp in left leg that hurts and shakes when i get stuck in traffic it doesn’t really affect my driving much…is this a good or bad thing?

xx

Hi

Tina has given you good advice. Don’t worry about the DVLA, they will put you on a 3 year licence which is standard proceedure. My left leg is considerably worse than yours sounds and I just drive an automatic, problem solved.

All this takes time to come to terms with, be gentle on yourself!

Anne x

Hi, its good to hear how well youre dealing with the new diagnosis hun.

Re the meds thing…I`ve never fitted the criteria for DMDs, so cant comment on that.

But I do want to wish you well for your future and outlook.

Yes, it`s all a muddle right now, but things will fall into place. Just pace yourself and try not to do too many activities close together.

But with RRMS and DMDs, you may find your life isnt so much different from when you were well. Hope so.

luv Pollx

Hi Lea, I was dx in January this year with rrms. My neuro offered me dmd’s and we both decided rebif would be best as it’s only 3x a week and I am - well was needle phobic. In the March I was invited to a dmd info day at Southampton General where I met other people with ms (one lady had it for 9 years!) and was going on them. We could play with ALL the dmds, injecting fake skin and sponges etc which was really good as each drug can be delivered in different appliences so you could pick what was best for you. On this day is also when I could totally decide which one to choose if I wanted to change my mind but I stuck with rebif and the rebismart. I had a blood test straight after then it was about 2 weeks for the drugs to be ordered and sent to me. My nurse then came out to help me do the first one and that’s it! Easy and it’s cleared me of my phobia! I have a blood test every month to check liver functions etc. Have had NO side effects at all from rebif just the red marks at injection sites. Good luck with whatever you choose. Maybe ask if where you are there is a dmd info day. It helped me alot. Oh also we were told that the latest statistics show that progression is slowed by up to 50% on dmds and not 33%. Hope this helps. Dawn x

Hi Lea What now is…take your time to get your head around the diagnosis, ask lots of questions, write them down as you think of them and above all, be kind to yourself. It can take a while to come to your personal form of acceptance but it will come. Catherine Xx