Forum

Back again and with my diagnosis

Thanks all for your answers when I last posted in January. I have now had my further MRIs and was diagnosed with MS on Wednesday. I don’t feel shocked (we have been expecting it since December), in fact I don’t really know how to feel!!

Congratulations and commiserations

It’s good to have an answer at least and hopefully you’ll get lots of support too. Still sucks though :frowning:

It’s all rather early, so when you’re ready, please make sure that you have contact details for your MS nurse - they can be invaluable.

You also need to tell the DVLA - MS is a notifiable condition.

Also, make sure to check any insurance policy, mortgage policy and anything else you can think of that might contain a critical health clause - MS is covered.

At some point that numb feeling is probably going to wear off. If things get tough, please see your GP and ask for some help. Counselling can be incredibly helpful - it certainly helped me loads.

And you know where we are of course!

Karen x

Hi Clemette

It’s a double edged sword, so yes, congrataulations and commiserations.

There’s lots of info available to you that you may find beneficial - from here and the ms trust website. Booklets and the like which you can download, order by post or just read online. But whilst I think knowledge is power - it’s also too easy to have too much at once. So make sure that you’re ready before you launch into anything. Don’t overload yourself. Plus, receiving a dx is a big deal in itself so it’s important to take your time adjusting to it. There’s no rush other than looking after you.

If dmd’s have been mentioned to you then the ms decisions website can prove useful. Your ms nurse will also have more information for you.

The other thing that’s worth mentioning is whether you tell people - family & friends etc. It’s personal choice, up to you. As Karen said you do need to contact the DVLA and if you work it’s also worth considering telling your employers too. Once they know they’re obligated to make ‘reasonable adjustments’ to your hours and workplace if it’s required.

It’s very normal to feel all sorts of emotions - but given a bit of time you will get used to the news. Remember we’re here if you need us.

Debbie xx

Give it time to sink in love. Make sure you`re getting the benefits you deserve, eh?

luv POllx

I was the same as you - I was expecting my diagnosis but it doesn’t really make it easier to bear. It’s still a shock. Take things a day at a time at the moment and give yourself time to get used to the idea. Thinking of you, Teresa xx

Thanks all. I think it is a bit easier as I feel well at the moment after months of feeling shocking. I have declined an MS nurse for the moment and all treatment apart from high dose Vitamin D. Because it has been a drip, drip journey to diagnosis (in February the registrar neurologist diagnosed “probable MS”) my friends and family were already expecting it and the university knew as I needed extenuating circumstances for my exams. So at the moment it is full-time study, part-time work, raising two little ones and keeping going until anything changes. Thanks for all your kind words. Sam

Hi Clemette

I’m glad that you’re feeling a bit better now

An ms nurse can help with all sorts of issues so at some stage it’s definitely worth reconsidering having that initial appt with her. That way she’ll be on hand should you need her. Mine is worth her weight in gold.

Great news too that your family & friends (and uni) are behind you - having a good support network is a massive help.

Good luck & take care of you

Debbie xx

Hiya x

Its a weird feeling getting the diagnosis ( I was only diagnosed in Dec last year - and even now I keep thinking they made a mistake!).

I would really reccomend seeing the MS nurse. I found it really useful. I have been discharged by neuro until I need to see him so felt a bit stuck about who to contact with possible relapse symptoms stuff like that. The MS nurse is your point of contact normally. They will discuss your symptoms and see if you need to be seen - start steroids stuff like that. I also discussed vitamins things like that. The most upsetting thing I found was it all became very real. Bit of a shocker as I think I had buried my head in the sand a little bit.

Hope that helps xxx