Newly diagnosed - 7 weeks into relapse

New diagnosis and before diagnosis
1

Hello,

For anyone who dares to read I should apologise for what I fear may be long winded waffle!

I have just registered and became a member and will begin my posts…

Apparently I have had RRMS for 4 and half years.

Back in 2011 I had pins and needles tingling sensation in my left hand. I got tested for carpal tunnel syndrome but results were negative. It left after 2/3 weeks. I just put it down to being left handed, working at a computer, doing overtime and a computer course.

Then, since 1st August this year I got tingling sensations all over. Soles of feet, legs, stomach and back and both hands.

I thought maybe a trapped nerve? Injury from exercise class?

I went to see my gp, followed by a private neurologist appointment (with no private health insurance), a private mri (after a right royal muck up from an a and e consultant at a local hospital). 6 weeks later, follow up appointment with private neurologist and I’m told I have RRMS.

I was given 12 day tapered dose of oral steroids. Will be followed up now within nhs.

Excuse my lack of medical informative language. Right now I just need to get it all out there.

I know there are people worse off than me.

I know I’m lucky and blessed in so so so many ways.

Today though, has been a rough day. I can’t bare this sensation in my hands!!! It is effecting every single aspect of my daily life. I just want it to go.

Think that’s me. Thank you for reading if you’ve managed this far.

Take care everyone

Bx

2

Hi,

although you probably don’t think so at the moment, but you’ve been fortunate in receiving a really quick diagnosis, this can often take years.

Once you have your follow up appointment that might be the time that the neuro wants you to become familiar with DMD’s, you’ll probably be put in touch with an MS nurse too. These nurses are invaluable, if you’re lucky enough to have one, & she/he will guide you through the various aspects of MS.

Try not to worry, easily said I know…but the symptoms you now have could possibly fade once the steroids begin working, although you’re having a bad day, it won’t last forever.

Good luck

Rosina

3

Hi Rosina,

I completely agree, I know that it was a relatively quick diagnosis albeit expensive and frustrating. I am so grateful for that.

I know it’s important to remain positive and there really is soooo much I have to be grateful for.

It’s just hard all of the time.

Last day of steroids tomorrow, and some symptoms had left by the time I got diagnosed and started steroid treatment. The neurologist did explain they usually work better for muscular symptoms than sensory, but I haven’t given up hope on them helping. This sensation in my hands is just driving me crazy!

I understand there has been a lot of developments in the disease and treatments in the last 5-10 years. I have a good support network. I am hopeful and positive about the future. I don’t think I’d be eligible for DMT (yet) as I don’t fit the criteria for them at the minute anyway.

I have a wonderful partner, an amazing 18 month old little boy and was thinking of number 2…I guess I’ll just see what the next few months bring.

I know I’ll get there. But I guess there’ll be bad days on the way. It’s good to sound off here. Thank you for reading and for your reply.

Take care

Bx

4

Hey Biddy. Ditto Rosina. It may fade to nothing. Mine did, to start, but now my hands ache daily… BUT, I’ve had this nearly two decades, and my hands went , what four years ago?.. at about 80%, but I cover it with being clumsy. … makes typing fun/ annoying. … welcome to the ride

5

Hi Carraboy,

I hope it fades. I truly do. I have faith, belief, optimistic that it will.

Its just the whole Unknown! Argh!

I hope I can continue to look on the positive and lighter side of it like you! Thank you.

Bx