Last reply 4 years ago
Newly diagnosed

Hello sorry I am new to this but it seems to be the best place to air my concerns and worries.

I got my first symptoms a year ago of complete numbness down my right hand side and at first doctors thought I had a stroke but after many tests I finally got diagnosed with RRMS in May 2014.

I have two young children and feel like I have let everyone down as I am not as active as I use to be and very rarely go out on my own as I have a fear of falling as I am very unsteady on my feet.

I just find it very hard to see a light at the end of the tunnel as my life has changed so much in a short period of time and my whole family life has been turned upside down as a result of me.

Sorry about being so negative

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4 years ago

Is it possible you can get some Nero physio, it has made a huge difference to my stability, I had just 5 sessions and did the exercises. It helped how far I could walk too.

You have not let anyone down. I am sorry you feel that way. I know you mean it wasn’t what you predicted or wanted, but you know, hey, you didn’t choose this. There is still love and example you can show and time you have. Jx you

4 years ago

@cbladygirl80 i think as time goes on you just learn to adjust to life as it is.. i just wanted to say keep ya chin up and don’t be to hard on yourself xx

4 years ago


I have just been reading a story about a girl with ms who runs long distance runs, she has done many. Just goes to show nothing is impossible if we stay positive and use the ms to push you to do more. I personally found that doing my own exercises and doing it daily helped me loads. Do a little bit extra each day and take vitamin d.

Keep smiling x

4 years ago

@cbladygirl80 , you are not being negative. You are still reeling from the shock of the diagnosis. It has been documented that following a diagnosis of MS, we go through a rollercoaster ride of emotions. This ride takes us through several emotional phases :-

1. Shock and Denial
2. Pain and Guilt
3. Anger and Bargaining
4. Depression, reflection, loneliness
5. The upward turn
6. Reconstruction and working through
7. Acceptance and hope

And it’s not a direct route from 1 to 7, we can double-back and revisit phases.

You can probably see where you are at the moment, as the full journey can take a year or longer. And, we’ve all been on this journey.

I can understand your worry and concern, with having a young family. But, they are natural concerns that every parent gets, for a variety of reasons. I should imagine you had concerns about being able to cope before the birth of your firstborn.

MS, whilst still a taboo subject, is now a manageable condition. You just need to look after yourself, have a healthy, balanced diet and try and avoid life’s extremes, e.g. try not to over-do it.

And, most importantly, try not to worry and stress about the situation. These negative emotions do not result in anything. In fact, they can actually make MS worse.

As for your balance, it’s a good call above to consult a Neuro-physio. You should have been assigned an MS Nurse and they should be able to arrange a Neuro-physio referral for you.

And, consider getting a walking stick. I can imagine your reaction to that suggestion! But, they do provide a bit of additional comfort and can now be acquired in a variety of colours and designs. So, a fashion accessory! 😆

But, for the time being, be kind to yourself and enjoy being a Mother. Learn about MS and how you can best manage it.

And, pop back here and pose any questions or concerns you may have. 😉

4 years ago

I echo all the above, especially about getting a referral for neuro physio. I also know from experience that what’s going on in your head directly affects what you can and can’t do as regards walking ability. The mind-body connection is a fact. Sorting that out is not a one-stop process, as @stumbler says: getting the right support hurries it along, though! Are you getting MS nurse support? If not, why not? Another route is to ask your GP for referral for cognitive behaviour counselling. It’s not a magic bullet, but it does enable you to sort your thoughts and start focusing on how to cope. You’ve obviously got a really busy life, with lots expected of you, but now is the time to ask for support. We’ve all done it! xx

4 years ago

Thank you all for your kind words and you are right I do need to sort my head out I have been refered to a physiotherapist and I have an ot. My Ms nurse always seems to busy to talk. I have a walking stick but I still find it daunting going out on my own I am so scared of falling over so I spend most days indoor on my own with my thoughts which is not good. I struggle with my thoughts and that’s what gets to me as I use to be a very positive outgoing person and I can’t seem to get that back. I have overcome many hurdles in my life but I am struggling with this hurdle as I am not the same woman my husband married nor am I the same mum I use to be. Don’t get me wrong my husband and kids never complain and are understanding but it’s all in my head I just wish I knew to to get past this.

Thanks again xx

4 years ago

Wow @stumbler didant realise that, 4yrs and still on denial. Iv got so much to look forward to, amazing how the little things can keep you sain. Lol

4 years ago

hey you have not let anyone down!
The fear of falling is huge and I really understand it, but I have to dodge between hundreds of lumping huge teenage kids with no special awareness everyday in my job and I have not fallen yet. I don’t say this to boast, but just to share that when I stop to think about what I have to do, to just get to the loo, then I am really paralysised with fear, but when I have no time to think, I have to get on with it and ( touch wood) I have not fallen over yet .
Get out walking again as soon as you can, in situations that are not too scarey and try to build up your confidence again. Often our muscles are stronger than we think. You can do it ! Big hugs.

4 years ago

Hi cbladygirl180 My thoughts are with you as it is a shock being diagnosed with MS and that your old life seems lost to you forever but I bet you do your absolute best for your kids and husband and you put yourself last. As for not being able to do the things you used to with your kids just hold on to the hope that with proper support and maybe medication you will be able to do so much more than you think.. I also had great difficulty while out walking but applied for a blue badge and just being able to park closer to my shop is a god send.. and as for walking stick I too have one and prefer to have it for support and to give a visual indication that I am wobbling because I have a disability and haven’t been in the pub all morning.. ;). I also find now I have to take things a lot slower than I used to and take a bit of time out when I can…so don’t feel guilty about a day on the sofa with a nice cup of tea and daytime telly :).. just put yourself first sometimes and keep in touch with us on here.. just remember you are not alone 🙂 Best wishes..

4 years ago

Hello, I too am newly diagnosed, 5th November to be exact.
My mri scan shows extensive demyelization & my neuro consultant thinks I’ve had it for a few years & am now SPMS.
Pleased to have a diagnosis at last but oh my am I riding an emotional rollercoaster.
There is no right or wrong way to react,I’m sure we can all support each other & provide a safe place to talk, cry, scream & laugh.
Best Wishes

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