Last reply 7 months ago
New to this

Hi, I’m new to this site & only recently been diagnosed (Jan 2018) however my first symptom Optic Neuritis was nearly 10 yrs ago. At that time I was 7mths pregnant & had an MRI & lumbar puncture & there were no other signs of MS. For around a year I had check ups with my neurologist but got discharged.
Over the last couple of years my symptoms were getting worse & more of them but I was in denial & never told a sole 😔 it got so bad last year that I finally admitted to myself that I needed to see my GP & made an appointment (still told no one else) I waited months for my MRI which was in December 2017 (I told my partner 2 days before) then received my diagnosis on 3rd January 2018.
I felt relieved tbh if that doesn’t sound crazy! As I had kept it hidden for so long it felt a weight lifted.
Now it’s been a few weeks (I have my first appointment with my nurse on Monday) and I have so many questions/things going round my head!
My neurologist said I have mild MS – my response immediately was “well if this is mild I dread to think what the worst is like” What exactly is mild MS?! I would like to know which category I fall into.
As much as family can look into it/research it, and as much as they are there to talk too, I feel they can’t help me.
Sorry for the ramble but I keep it all to myself as I don’t want to be seen as whinging or being lazy etc when I don’t want to go for a walk when I’m having a bad day etc etc
Thanks for listening 😊

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vixen
7 months ago

Hello there, and welcome. Hmmm, not sure about ‘mild’, perhaps non aggressive is more appropriate? Even though that’s what I was told I had I wanted to laugh, thinking that it feels bloody aggressive, having invaded my life! The good thing about MS nurses is that they are always there for queries anytime you need reassurance, you can just phone her. I was on the phone often at first but now rarely bother.

As your diagnosis is recent, it might be that they haven’t decided which type you have yet, soyou might have to be patient. My sister also has MS and she waited about nine months to confirm after diagnosis. It’s really important they get it right so you can receive the most appropriate treatments.

It sounds like you are managing well under the shock circumstances. Look after yourself, and know that you have tons of support on Shift x


clairg1
7 months ago

Hi thank you, haha yes that’s what I thought! Mild?! Doesn’t feel milk when my leg/foot won’t work ha!
Wow 9mths, that’s a long time!
I have been thinking that I mind find out more on Monday when I see my nurse & have answers to some of my questions which is better than now I suppose.
Thank you 😊 x


tootes
7 months ago

Relieved is good. I was relieved, it allows you to move forward, to realise that you don’t have any of the other potential conditions that you were worrying about. You may go through other emotions in the months to come which is fine. Just remember you are still you, you haven’t changed you just have a diagnosis for those odd things that have been happening.

It allows you to explain to folks that there is a reason you are fatigued, or maybe walking a bit wonky, or whatever that at brings. It allows you to access better health care support through your MS nurse, and if needs be to apply for social security(benefits) as you have a diagnosis and evidence to support your application.

Do pick up or order the differing booklets from the MS Trust, you can look at them in your own time and hand them to family to read, taking pressure off you to explain things over and over. Your MS nurse may have copies of them.


stumbler
7 months ago

Hi @clairg1 and welcome.

It’s a good idea to start making a note of all the questions that you want to ask the MS Nurse. Then, tick them off as you go along.

And, here’s a link to the MS Trust’s booklets, as suggested above :-

https://support.mstrust.org.uk/shop

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