brownk 12/12/14
Last reply 3 years ago
Newly diagnosed

Hi all. So my story in brief I had a tingling sensation in my left hand and arm Dec 2013 this then went away but returned before too long, I then felt a weakened sensation in my left knee and a numbness sensation on my left side of tummy, kind of rib cage area. I googled and convinced myself I had ms but everyone close to me said noooooooo don’t be daft!! I whipped myself into a frenzy and saw a neurologist Oct 2014 he examined me and basically gave me the all clear reflex/examination wise and wrote to me saying it is highly unlikely you have anything sinister but sent me for a mri just incase. Last week I got the results and it’s highly likely I have ms! I had 5/6 lesions on my spine and one at the base of my neck. I was half prepared as I had convinced myself but my goodness this has rocked my world. I have now got to have a brain scan and had a lumbar puncture earlier this week and then get the results before treatment etc begins.
My symptoms now well. ..I still have a tingling left hand and a weak left knee, I have a numb tummy and have a strange ‘head’…kind of dizzy but almost feel like I’m walking on a boat! I wonder if I’ll ever feel 100% again?
I thought writing this might help me some more in terms of coming to terms with the future. I have two young daughters, 2&7, and a hubby so lots to keep me going but….The future is a scary place right now.
Thanks for listening x

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3 years ago

Hi, @brownk and welcome to our piece of cyberspace.

As you probably now know, MS is notoriously difficult to diagnose, so given your timescales, you’ve had a quick diagnosis.

But, MS is now a manageable condition, so you just need to learn to manage it. The Neuro will be looking to prescribe some Disease Modifying Drugs (DMDs) for you. These are designed to reduce the number and severity of any future relapses.

Now it doesn’t matter if you were expecting this diagnosis or not, it still can come as a shock. So, give yourself time to take this in and treat yourself nicely, even pamper yourself.

Learn about your MS, as you’re doing by joining us. We have a range of experience from the not yet diagnosed to old fogeys like me, who have had the condition for too many years. We can help by answering any questions or pointing you in the direction of good information.

Don’t rely too much on Doctor Google. Only use creditable sites like the MS Trust and the MS Society.

And try and bring balance into your life. A balanced, healthy diet and a balanced lifestyle, so try not to overdo things.

And try to banish worry and stress from your life. I know, am I joking, a young family and a recent diagnosis! 😯 But, worry and stress achieve nothing and can antagonise your MS.

So, any questions ❓ 😉

3 years ago

Hey, hang on in there, it is a wild ride being diagnosed, but there is calm water on the other side and lots of good advice from friends on this site.

3 years ago

Ah thank you. I will certainly try the pampering

3 years ago

I think the scariest time is what you describe – not knowing what the future holds. But once you’re on treatment you’ll begin to get your life back. Yes, MS is unpredictable but you’ll find that quite a lot IS within your control. @stumbler is right – an awful lot is down to your lifestyle. It’s also important to have the right medical help and it sounds as though you have. Big hugs, xx Kay

3 years ago

I wrote much more but it’s disappeared Argghhh. Got to log off now but will reply with a few questions tomorrow

3 years ago

Being diagnosed with ms really is a roller coaster of emotions unlike you I didn’t look on the internet until I’d had official dx mainly because of self denial and just wishing it wasn’t true,hopefully things move along quickly for you and things begin to improve soon and your symptoms ease off.

3 years ago

Hey @brownk

I was diagnosed March this year, I lost use of my left side suddenly and like you I was convinced I had ms. Everyone told me I was being silly but 2 weeks later I wAs diagnosed with ms. I thought my life had ended. But with determination and changing to a healthier diet etc I got myself back In my heels and I have been travelling and I am doing well. It’s a massive thing to come to terms with but you know with all the new knowledge about ms and new treatments it’s not so scary. I read about a woman the other day who runs marathons with ms. Anything is possible and don’t let anyone tell you to give up in your dreams just see the ms as something to challenge and prove to yourself and others that it’s not holding you back. You will be fine, just keep smiling and set yourself goals


3 years ago

Hi all
Thanks for replying. It felt so lovely to hear from you all and hear your positive stories/outlooks.
Back to work for me on Monday after a week off to digest and try and come to terms with my diagnosis. I’m not there yet I know it’ll take a while but I thought it’d be better keeping busy and love my job.
I guess my next step is my brain scan on Tuesday next week and then getting the results of that… and then medication of some kind.
Just a few q’s: Can the medication help reduce existing symptoms? For me in particular the dizzy feeling?
And also is there a particular diet recommended or that you find works well? Maybe we get a dietician referral..not sure

3 years ago

@brownk , the medications can be split into two main areas:- Disease Modifying Drugs (DMDs), to reduce the number and severity of relapses in the future, and drugs to address the symptoms of MS, e.g. dizziness.

Unfortunately, MS relapses can leave us with symptoms, which may disappear over time, may be permanent or may appear intermittently. There’s no definite prognosis.

Do keep an eye on your body. If something “new” starts happening, then let your Neuro team know. You should be assigned a specialist MS Nurse, as a primary point of contact for anything MS. These Nurses are invaluable as they specialise only in MS.

Anything “new” could be the MS playing up, or it could just be a normal health problem. It’s always worth talking to the MS Nurse to try and work out which is which!

It’s a big learning experience, but you have a large knowledge resource here. 😉

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