I'm staying here - RRMS DX

New diagnosis and before diagnosis
1

I was at the neuro yesterday and he has diagnosed me with RRMS, it’s not a shock it’s what I was expecting. They are going to get me started on tysabri as I’ve had a few relapses in the last 6 months, just waiting on the JC test. Funny thing when he asked meto do the touch your nose test wth my eyes closed I poked myself in the eye, twice. I can do tha test fine today though.

Because it’s what I was expecting life just seems to have continued as normal, I even went back to work after my neuro appointment. My daughter had a friend around for a sleep over last night and I went to watch some motorsport today as I’d planned to do already. great day for it but I’m a bit tired after walking up and down the pits.

Just thinking of all the things I need to sort in the next few weeks, I have to tell the DVLA, I’ve been told to expect that I have to go on a three year licence. I’ll also need to start off the process of claiming on my critical illness policy.

I’ve started telling some people already - quite a few knew I was being tested so it’s not been a shock to them. I’ve told my mum and dad and my mum is telling my brothers. The people above me at work weren’t in yesterday so I’ve not told them yet, I’ve told some of the others that I work with though.

I’m not sure when we will tell the kids though, I think I need to understand more about it before I tell them. They are 6 and 2 so I think the 6 year old would understand but the 2 year old is too young. So far we’ve only told them I have a sore leg so we’ll probably leave it like that for now.

2

Sorry that you have been signed up without the option for the club that no one wants to join. But welcome.

Here is a link to the advice on the main part of this MS Soc site about telling family - there is a special section about children and links through to further resources. http://www.mssociety.org.uk/ms-support/emotional-support/living-with-ms/telling-your-family

It is a tough time that you are going through, but there’s plenty of a practical nature to keep a person occupied, as you say. Just take it a day at a time, and don’t worry if you find you are having a bit of a wobble from time to time.

Good luck.

Alison

3

thanks for the link, I’ll be ordering one of the childrens books so we have it ready when we tell them.

after having had another night to sleep on it I think I’m quite relieved to have a diagnosis, I’d rather it wasn’t a permanent condition (as I’m sure all of us do) and although I was expecting the MS diagnosis I was a bit worried they would say they didn’t know what it was.