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Advice needed

Hi there. I need some advice after been discharged from hospital on 20th June after having numbness/tingly in upper body, vision loss and affected co ordination and balance. I had mrI and lumbar puncture and course of steroids.I was then told by a Neuro in hospital that he was 99.9% sure it’s ms but couldn’t be a definite until lumbar puncture results are back. I was told I would have an urgent referral to see a m.s specialist. My appointment came through but its not until the 1st September so I rang and complained as I had been sent Home with no information or support and just left. They put me in touch with the ms nurse who is so nice and wants to see me in her clinic this week. So now I am very relieved but also confused she said she will find my lumbar puncture results and go through it all but then what will happen at my Neuro app in September? What am I to expect from this appointment with the nurse? I’m very confused any help or advice is greatly appreciated.

hi rose

its not a nice way to find out such life changing news but you will find your ms nurse invaluable.

she will explain what the results mean and you will be able to ask her any questions you have.

the neuro appointment will be a chance to meet your consultant and may lead to you being offered a DMD (disease modifying drug).

take your time trying to absorb this news.

get as much rest as your body needs (which won’t be the same as you’re used to)

carole x

Hi Carole thank you for reply. Yes it has been a horrible couple of months they said all along they were thinking ms ( i had an episode similar 2 years ago whilst pregnant) which is making them think even more it is.

I was told by the neuro who saw me he was 99% then the dr who discharged me told me it was ms but I haven’t been given an official diagnosis as such which is the most frustrating thing!

She seems lovely and was nothing but apologetic and was very shocked why I hadn’t been sent to her before. Can she give me the official diagnosis or do I have to wait too see neuro she said she would get my lumbar puncture results and that’s what we are waiting for to get the definite.

Rose

How horrid for you to be feeling cast adrift in this way. I am glad that the MS nurse has ridden to the rescue and hope that your consultation with her will at least reassure you that you aren’t forgotten and that there is a support network there for you. I suspect that making a formal dx of MS is always going to be the neurologist’s call but, given that you have a pretty good idea already what the matter is, perhaps the priority for now is to find out a bit more about what happens next and what are your treatment options if you do end up with an MS dx. At least an opportunity to talk these things through with a specialist MS nurse should help you to find your bearings and feel a bit less isolated.

Good luck with it all.

Alison

Thank you Alison. Yes the situation is not great. The ms nurse was nothing but nice to me she said i definitely won’t be left again and she will get me sorted. Yeah that’s what I thought about the diagnosis that it’s only the Neuro but she said she will get my results which makes me think she will then know the definite :-/. It’s nice to know I’m finally been heard now.

Rose

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