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Officially diagnosed today

Hello, Saw my Neuro today for the follow-up after my MRI in November and he has diagnosed MS. He does want me to have an LP and he said that it is something he does before starting someone on DMDs. I asked him if it was negative would that change his diagnosis and he said no. He explained that the MS Nurse would be in touch shortly and he is going to sort out Neurophysio to help with gait. I asked him how long he thought it was going on and he is pretty sure it goes back 7 years. He told me to inform DVLA and insurance etc. I feel weird. I wanted my GP to be wrong, hearing it from the Neuro makes it too real. Sam x

Hi Sam.

I was rather expecting it - sorry there was no miracle intervention at the last moment :frowning:

Given that DMDs are on the horizon, maybe have a look at the msdecisions website when you’re up to it? It will most likely speed things up if you’ve already made a decision when the MS nurse calls.

Remember, it is NOT the end of the world. It takes some getting used to, but life with MS really can still be good.

Karen x

Hi Sam Just wanted to kinda say…well hi, sorry, sympathy and everything else !! Hugs too…it’s gonna be ok…honest !! Xx

Thank you both xx I have looked on the MSdecisions website, thank you Karen, and used the tool. I will go back to it a few times I think as I’m not the best decision maker, best to get a head start!! Sam x

Hi Sam

sorry for the news but glad you have some answers and have left the world of limbo. It’s going to be up and down for a few months coming to terms with the news so take things easy and be kind to yourself.

I’m not diagnosed so can’t help you with DMD side of things but wanted to wish you the best.

Reemz

X

Sam, I’ve just started on Rebif if you want to ask any questions. Xx

Hi Sam, Sorry for your dx - it did seem to be heading that way. You will feel odd - the words suddenly make a nebulous idea real. It takes some getting used to but with time you’ll get there. It sounds as if your Neuro is doing all he can to help. I hope you are getting lots of support from your loved ones. Thinking of you, Teresa xx

Hi Sam,

I was diagnosed last summer. When I was first diagnosed, I’ll never forget the Neuro’s words - “You have inflammation on the brain & spine caused by MS”. The rest of the consultation was a blur. I then had an LP which confirmed the diagnosis and then I was referred to the MS Nurse. I had already decided to start Copaxone (thanks to Rizzo suggesting I use the MS Decisions website) and I started 2 weeks ago. It will take a while to sink in but this forum is amazing - everyone is so helpful and understanding. The first thing you need to do is get your head round it, accept it and overcome and your friends & family will soon do the same.

Good luck - you’ll be fine.

Sarah

x