Forum

Help and Advice

Hi

I have been diagnosed with MS about 6 weeks ago. Been trying to come to terms with and understand it fully.

Legs twitching, knees hurt when I walk, balance is very bad. Days like today I feel like I was about to collapse.

Any help, advice or tips would be appreciated

thanks

Salma

Hi Salma, sorry to hear you have joined our club. 6 weeks isn’t long in regards to getting your head together. It will take you a while to digest having this news. Be kind to yourself, MS loves stress, you need time to get your thoughts together. You will receive much comfort & support here on the forum, we are all in the same boat so to speak. There will always be someone here that can answer any questions you have, I’m hoping you have the appropriate MS team looking after you & you have good support from others. It’ll take time to rationalise things, but you are not alone & your fears are a natural reaction, take care Tracey

hi salma i support tracey’s words of wisdom. the one thing that stands out from the early days of my diagnosis was something a physiotherapist said to me. “this is your new body and you need to understand it”. ten years later i still remind myself of this. just believe us when we say that you are still you.

Hello Salma Both Tracey and Carole are very sensible in their advice. Take some time to absorb the diagnosis. It takes a long time to come ‘to terms’ (if ever) with having MS. Have a look at this for information: https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis You haven’t said whether you’ve been diagnosed with relapsing remitting MS or a progressive form. I would expect in the early days, unless there is very good reason otherwise, that you’ve been diagnosed with RR. See: https://www.mstrust.org.uk/a-z/types-ms Assuming it is RRMS, your next decision will likely be to choose (with help from your MS nurse hopefully), a disease modifying drug (DMD). Here is a guide to the various types: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid You are unlikely to have completely free choice of all the drugs as it will depend on how ‘active’ your MS is as well as the drugs that are available from your prescribing centre. It’s generally agreed that a DMD is advisable for people with RRMS. They are designed to reduce both the number and the severity of relapses. You’ll see that all of my links come from the MS Trust. They are an excellent source of information as of course is the MSS. Best of luck with your next few weeks and months as you wrap your head around your new reality. And come back here for information and help when you need it. Sue

Hi Salma,

Welcome to this forum.

One thing that will help you to get a grip on things is courage.

And there are a lot of people on this forum who can help you to find the courage you’ll need for a good life. It’s just different from the one you were planning for.

We look forward to getting to know you.

Best wishes,

Anthony

Hi

Thank you everyone for the kind words. Yes Sue you are right, diagnosed with RRMS. I have my first physio appointment today. I’m still waiting to meet the MS nurses.

Thats good advice having to get used to and understand my new body.

I look forward to making new friends

Thank you again

Salma

Hi Salam, welcome. Big hugs