Newly Diagnosed...kind of

New diagnosis and before diagnosis
1

Hi there,

my story is that about 3weeks ago I started having pins and needles in my feet. This progressed over 4 days and I had felt numbness just under my breast and in my finger tips.

I finally took myself to a&e… fast forward. I’ve had a lumber puncture and my oliga… bands show its MS, together with an MRI showing inflammation and slight lesions in my spine (demyelination).

I was given steroids for 5 days. This has brought back feeling (but for my top part of my stomach and half of my hands.

I saw a neurologist last week who confirmed it was MS (didn’t tell me the type) and basically said, join the society and I’ll see you in a year!!!

I am now in limbo.

Will normsl feeling return in my hands?

Am I supposed to be on some treatment plan?

Do I just wait for a relapse?

Am I to carry on as normal ?

I’d be so grateful for some advice/info and reassurance.

2

Flippin eck Anon, that was chuffin quick to diagnosis! People rarely such a quick diagnosis, but yeh, it does happen.

So, youre not actually in limbo cos you know whats wrong.

But I do understand your feeling of limbo with it all happening so fast and the neuro saying see you in a year!

Doesnt sound terribly professional at all.

New MSers are usually given access to an MS nurse. I expect this will follow.

There`s quite a bit you need to know

eg what type is it? If it is Remitting/relapsing, it is possible you could try a DMD (disease modifying drug to reduce attacks)

Ring the hospital you attended and ask to speak to an MS nurse and hopefully you can find more out.

As regards benefits (PIP) this can be claimed if you need help with personal care/cooking/mobility.

Its all such a lot to take in I know. Well do our best to support you here chick.

Boudsx

3

blimey - very quick.

I suggest you make a fuss with your GP & neuro, you need information so that you can make informed decisions about any treatment plan.

Good luck

Mick

4

Thanks both Ive made an appointment privately to see another neurologist. What are the questions I should be asking? I still have tingly hands and numbness around my stomach

5

Hi again. You need to ask what type of me you have and would DMDs be in order.

When do you see the neuro?

Let us know how it goes.

Boudsx